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FALL 2014A SEASON OF HOPE

Issue 3

INSIDE:2014 Advocacy Conference 10 / Chasin’ A Cure 32 / Janesville’s Walk To Defeat ALS 48 / Brad Hicks’ UN Talk 52

It’s TimeWe Stop Calling It Lou Gehrig’s Disease.

IT’S TOO LIMITING. IT’S TOO OUTDATED. AND IT’S TOO POSITIVE.

The thing is, ALS is particularly cruel. It shuts down most every part of the body—

except the brain, which remains unscathed to ponder how such a brutal disease

can continue to be largely ignored and underfunded.

But this publication isn’t about that. As the name implies, it’s about hope.

Hope that anyone afflicted with ALS can find some peace and perspective

in the stories of others facing the same struggles.

Hope that family members can also take some comfort, knowing they’re not

the only ones dealing with the frustrations of the disease.

Hope that our donors and sponsors can see that their generous efforts

are not in vain.

Hope that those who are unfamiliar with ALS remain untouched,

but not uninformed.

And hope that one day, through research, we’ll turn the tables on ALS

so that no one will ever again have to endure its ravages.

Until then, we offer this HopeLine of support.

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ALS — An Overview, It’s Time 02

Table Of Contents 03

Board Of Directors/Staff Listing 04

Letter From Director 05

Upcoming Events 06

Research Updates 14

Support Groups & Meetings 26

Care Services Update 29

In Our Community 54

Contributions & Memorials 72

In Memoriams 74

WHERE TO FIND US:

alsawi.org

Facebook.com/ALSAWisconsin

Twitter.com/ALSAWisconsin

YouTube.com/User/ALSAWisconsin

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Chasin’ A Cure 2014PAGE 32

The Joe Schulz StoryPAGE 38

Brad Hicks’ United Nations TalkPAGE 52

FEATURES

Table Of CONTENTS

HopeLine is published quarterly by The ALS Association Inc. Wisconsin Chapter 3333 N Mayfair Road, Suite 213 Wauwatosa, WI 53222P: 262.784.5257

BOARD/STAFF

Without the tireless efforts of those

listed here, there would be no HopeLine.

No ALS fundraising events. And no

unified effort to spread ALS awareness

throughout Wisconsin. We are immensely

thankful for the time, talents and passion

each selflessly puts toward the cause.

BOARD OF DIRECTORSThomas KettlerKathryn A. KeppelJoanne BlaesingJohn SchleicherDanielle Tonelli MathaiBenjamin BeckerHolly BlakeMary Brennan DrumlLaura HinrichsenJan KaufmanMary Beth Schlecht

STAFFExecutive Director: Melanie Roach-BekosSpecial Events Manager: Susie ReedMarketing Coordinator: Natalie Jansky Director of Care Services: Lori Banker-HornerCare Services Coordinator: Robin StanczykCare Services Assistant: Janet GaugerCare Services Coordinator: Mary DeFrain-JonesCare Services Coordinator: Carolynne YounkCare Services Coordinator: Diane Fergot

LEADERSHIP TEAMLeslie BarbiScott BucherColleen DoughertyCurt DownesMary DrumlShannon EganJim EutizziDave HannekenBrad HicksCandace LesakJoe LewisMeg McKenzieAlison MurphyDan O’DonnellJim PalmerSigne RednerTim & Trickett WendlerTeddi Zeman

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Executive Director: Melanie Roach-Bekos

W elcome to the 2014 Walk/Run to Defeat ALS season. I wish to extend a

big thank you to the sponsors, attendees and volunteers who supported the annual Janesville Walk in May. Chairperson Susan Sellman, Dave and Caroline Wagner, Chris Courtney, Bob Mills and Wanda Sonnentag deserve special thanks for their generous donation of time and talent. All proceeds from the Walks stay in Wisconsin and support Care Services, the ALS clinics at Froedtert and the VA, our equipment loan program, The Brian Trinastic Grant program and costs related to public awareness, communications, operations and advocacy efforts.

Please talk to family, friends and neighbors about the upcoming Walk to Defeat ALS in your area. It will be our 2nd year of offering the option of a 5K Run in conjunction with the Milwaukee Walk on Sunday, October 12th. Our Walk to Defeat ALS offers the best opportunity to promote awareness and raise funds, so we need each and every one of you. Please join us.

I’m also pleased to report that there are currently numerous community/family ALS benefit events occurring throughout Wisconsin. Anyone interested in planning an event is welcome to contact the Chapter office for assistance. Proceeds from these events provide much needed services for our patients and their families.

In other news, our Advocacy Team of Tom Kettler, Ben Becker, Laura Hinrichsen, Susie Reed and Tim and Trickett Wendler traveled

to Washington, DC in May to assure that our voices continue to be heard. A summary of their meetings is on pages 10 and 11 of this HopeLine. You can also find additional advocacy information at alsawi.org.

We saw many of you at our sold out 3rd Annual Chasin’ A Cure tailgate event, which was emceed by our very own Meg McKenzie and Brad Hicks. In addition to them and all the attendees, I’d like to thank all of our partners who made it possible, including Fox 6, Clear Channel, Oldies 95.7 and FM 106.1, Milwaukee Journal Sentinel, Lamar, Nicholas Family Foundation, AO Smith Foundation, Froedtert Hospital, Brewers Community Foundation, Sobelman’s, Jimmy Luv, Chasin’ Mason, Miller Brewing and all the UPS volunteers. I’d also like to thank Traction Factory for their outstanding creative and marketing genius of the “US vs. ALS” campaign promoting the event.

Thank you as well to Milwaukee Brewer Jim Henderson, who has graciously taken the time to help raise awareness by sharing his ALS journey through HopeLine and PSA messages. Professional athletes like Jim put a face to the ALS experience and in doing so become a voice for all families who quietly struggle with this disease every day.

Thank you.

“Awesome Ain’t Easy”-Team Gleason

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2014 and 2015 ALSA-WI EVENTS

Platteville Walk to Defeat ALS®

September 27, Mound View Park

Appleton Walk to Defeat ALS®

September 27, Appleton Memorial Park

Milwaukee Walk/Run to Defeat ALS®

October 12, Greenfield Park

Evening of HopeMarch 7, 2015, Milwaukee

ALS Care and Research SymposiumMay 2, 2015, Milwaukee

2014 COMMUNITY EVENTS

WAC “Chips In” Golf Outing // August 22, Ironwood Golf Course Randy Foss: rfoss@thewac.com / 414.427.6500

Ice Cream Ride for ALS // August 24, Burlington Deb Heinzelmann: debheinzel@gmail.com / 262.210.2568

Team Bernette // August 30, Manitowoc Tina Kocourek: tinakocourek@gmail.com

Boesch Bowling Tournament // October 18, Grafton Pub & Bowl Jane Boesch: janeboesch@att.net / 262.377.7979

Father Dan ALS Walk // October TBD, Maximilian Kolbe Church Jenny Biadasz: jbiadasz1977@gmail.com / 715.824.3380

American Legion Community Days // Date TBD, ALS Walk, Onalaska Contact: onalaska@gmail.com / 608.783.3300

Vintage Baseball Game // Date TBD Kay Van Sluytman: kay.vansluytman@thrivent.com / 920.684.3225

A Touch of Glass Dinner and Concert // Date TBD Kay Van Sluytman: kay.vansluytman@thrivent.com / 920.684.3225

Upcoming EVENTS

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S A V E T H E D A T E SA N D H E L P B U I L D C O M M U N I T Y S P I R I T.

WALK TO DEFEAT ALS®

2014

Platteville, Wisconsin T September 27, 2014 T Mound View Park

Appleton, Wisconsin T September 27, 2014 T Appleton Memorial Park

Milwaukee, Wisconsin T October 12, 2014 T Greenfield Park

T Milwaukee Will Be A Walk/Run Event T (For more info about the Milwaukee Walk/Run visit alsawi.org/walkrun.html)

All Walk to Defeat ALS® events not only provide huge awareness and platforms for honoring families affected by ALS, they’re also major fundraisers that help provide equipment and services for ALS patients within specific communities. The localized goodwill and neighborly compassion each event generates is immeasurable.

Now’s the time to register your team at: walktodefeatals.orgFor answers to questions or more info, visit alsawi.org, or call us at 414.831.3993.

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5326 • ALS Association • HopeLine Newsletter 2014 Summer Issue • ALS Awareness Print Ad8.5" x 11" (.125" Bleed) • January 26, 2015 4:06 PM • ML

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5326 • ALS Association • HopeLine Newsletter 2014 Summer Issue • ALS Awareness Print Ad8.5" x 11" (.125" Bleed) • January 26, 2015 4:06 PM • ML

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National ALS Advocacy Day & Public Policy ConferenceMay 7 – 9, 2014 Washington, DC

The ALS Association is a federated system of individual chapters under the leadership of the parent organization, which is headquartered in Washington, D.C. Our joint mission is to find a cause and a cure for ALS. We adhere to the “three legged stool” model of Research, Patient Services and Advocacy. The philosophy is that each of the “legs” is required to effectively fight the disease, care for those who have it and broadcast the message of the effects of ALS to everyone in the hope of enlisting their assistance in achieving our mission.

Early in May of each year The ALS Association gathers representatives from each of the 38 chapters throughout the country to participate in Public Policy (Advocacy) Meetings, current research review presentations by national ALS researchers and to visit our elected representatives on the Hill to share our priorities and ask for their assistance in achieving them. While the Association has many priorities, the number is trimmed to the most immediate ones, which are then presented to our congresspersons and senators in their offices on National ALS Advocacy Day.

This year the priorities of our Association are: $10 Million to continue funding the National ALS Registry; $10 Million to continue funding

the ALS Research Program at the Department of Defense (DOD); Passage of the MODDERN Cures Act (H.R. 3116); and, to ensure access to Speech Generating Devices (SGD) from the Centers for Medicare and Medicaid Services (CMS).

The first two priorities are ongoing needs created by the passage of the ALS Registry Act in 2008 and the ALS Research Program Act for the DOD in 2007. Each of these programs must be funded annually, so these priorities remain a necessity in our annual conversations with our elected leaders. The MODDERN Cures Act (Modernizing our Drug and Diagnostics Evaluation and Regulatory Network) is designed to provide an extended period of exclusivity for researchers who may be working on a promising drug or therapy which is nearing the end of its patent life.

The fourth priority, ensuring access to SGD’s from CMS, resulted from a new regulation placed in effect by CMS on April 1, 2014. It changes the purchase of SGD’s to a 13-month Capped Rental system, after which the patient would own the SGD. Hospitalization or entering of Hospice during the 13-month period would negate the rental agreement on the SGD and could result in the SGD being taken back. Ancillary to this but equally important is the future requirement by CMS that all SGD’s be “locked”, meaning they would not have other computer capabilities. The Public Policy Department is aggressively working with other health associations, attorneys and several senators and congressmen in developing a strategy to overturn this regulation.

This past year The ALS Association Wisconsin Chapter again participated in the Public Policy Conference and National ALS Advocacy Day. The delegation consisted of ALS patient Trickett Wendler and her husband Tim Wendler from Waukesha, Susie Reed (Chapter Special Events Manager), Ben Becker and Laura Hinrichsen (Chapter Board members and members of the National Board of Representatives), and Tom Kettler (President of the Board, Public Policy Chair and National Trustee).

On Thursday, May 8th, National ALS Advocacy Day, the Wisconsin delegation started with a Constituent Coffee with Senator Ron

WEWere

Heard

WEWere

HeardWritten by Tom Kettler

Johnson. Senator Johnson and Legislative Aid Elizabeth Schwartz graciously received our priorities and offered positive thoughtful support for each. Next, Meghan Ladwig, Legislative Correspondent for Senator Tammy Baldwin, welcomed us to share requests that she would then relay to the Senator. At each of the Senatorial meetings, the delegation left behind 425 letters that had been signed by many of our PALS, caregivers, and family and friends regarding the SGD-CMS issue. Thank you all for your terrific and very impactful response.

Leaving the Hart Senate Office Building, the delegation walked past the Capitol to the Congressional Offices. The first appointment was with Leslie Zelenko, Legislative Correspondent for Congressman Mark Pocan. Representative Pocan has supported our cause in the past by signing a “Dear Colleague” letter in support of funding the ALS Registry. Next, Allison Steil, Legislative Director to Congressman Paul Ryan, received our delegation and informed us of the Congressman’s support for our mission and priorities.

Representative Sean Duffy’s Legislative Assistant, Caroline Robinson, met with our group on behalf of the Congressman, who was with his wife welcoming a new child. Congressman Duffy has met with our delegation in the past and is a supporter of our priorities. After lunch, we conversed with Representative Ron Kind and his Legislative Assistant, Elizabeth Stower. They expressed their support and asked to be kept informed on the SGD-CMS issue.

Representative Tom Petri’s Legislative Director, Kevin James, discussed our ALS issues with the delegation and introduced

us to Congressman Petri for further conversation. We then met with Steffany Stern, Legislative Director for Congresswoman Gwen Moore, followed by a meeting with the Congresswoman. They both continue to be great supporters of our priorities, and Congresswoman Moore has signed “Dear Colleague” letters for both the ALS Registry and the ALS Research Program. Following our meeting, she signed on as a co-sponsor of the MODDERN Cures Act.

Congressman Reid Ribble had signed on as a co-sponsor of the MODDERN Cures Act prior to our meeting with him and his Legislative Aid, Erin Adams. Representative Ribble has met with the Wisconsin delegation in past years and continues to be an important advocate for the ALS cause. Our delegation was composed of members who were all from the 5th Congressional District, which is represented by Congressman F. James Sensenbrenner, Jr. Congressman Sensenbrenner was the sponsor of the ALS Registry Act in 2008 and has supported many ALS priorities. Most recently he sent a letter to CMS prior to April 1st asking that the SGD regulation be delayed until it could be further studied. Unfortunately CMS did not honor that request. Representative Sensenbrenner and Legislative Assistant Kara Webster met with our delegation and shared their thoughts on our priorities.

We are very appreciative to each of the Congresspersons, Senators and their Aides who met with the Wisconsin delegation to hear our story. As we fight this horrific disease, the welcoming message from our elected representatives and the granting of research funds provides hope that one day there will be a revelation of the cause and subsequent cure for our patients with ALS.

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2014

Our 10th Annual ALS Care & Research Symposium was one worth remembering. Individuals with ALS, their families and health care professionals came together to learn from one another, and to listen to keynote speaker Michael Benatar, MD, PhD, Associate Professor of Neurology and Chief of the Neuromuscular Division at the University of Miami.

Thanks to all of those who attended and to our Care Services crew for putting it together. Save the date for the 11th Annual ALS Care & Research Symposium, which will be held on May 2, 2015 at the Sheraton Milwaukee-Brookfield Hotel.

ALS CARE RESEARCH SYMPOSIUM

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Two dozen researchers from academia, government, biotechnology, and the pharmaceutical industry met recently to discuss how to push forward with development of biomarkers in order to speed ALS clinical trials. The one-day meeting ended with new commitments to improve infrastructure and standardize collection of biospecimens. It also brought new appreciation for how far the field has come, yet a realization of how much remains to be done to develop robust markers for ALS. “We are moving closer to solving this important problem,” said Lucie Bruijn, PhD, MBA, ALS Association Chief Scientist and co-host of the meeting, along with Steven Perrin, PhD, President of the ALS Therapy Development Institute in Cambridge, Massachusetts.

A biomarker is a measurable quantity, such as cholesterol in the blood or the brightness of a spot on an x-ray, that correlates with some aspect of a disease process. The use of a biomarker has the potential to allow clinical trials to be smaller and faster, thus allowing more new therapies to be tested rapidly.

Disease Subtypes and Types of Biomarkers“A major challenge in ALS is the diversity of the disease itself,” noted Robert Brown, MD, PhD, of University of Massachusetts Medical Center. There are 35 genes and counting known to cause or increase the risk of ALS and multiple different clinical subtypes. This all suggests there may be different disease processes at work in different individuals. It would be valuable to have biomarkers for each of those processes.

The existence of subtypes in ALS is one likely reason that clinical trials have had such difficulty demonstrating the benefit of new treatments. If a treatment is beneficial in only one subtype, but the trial enrolls all subtypes, the beneficial signal will be diluted out and the overall result

May 29, 2014Moving Forward on Biomarker Development to Speed Clinical Trials

will not be positive. “Biomarkers for subtypes of ALS, especially those connected to different disease processes, would be very valuable for stratifying individuals in a trial—to measure the treatment effect within each group,” said Merit Cudkowicz, MD, of Massachusetts General Hospital.

Some progress has been made. Recently, groups competing for the Prize4Life challenge in ALS showed that rate of disease progression could be predicted from a small set of blood-based markers. Using those in future trials should allow researchers to more finely analyze whether treatment slowed progression versus what would have been expected for each individual person, based on their baseline level of these markers. “The biggest fear is that we are missing effective treatments in subpopulations,” Dr. Cudkowicz said.

Biomarkers that determine whether a drug is “hitting its target” in the central nervous system are also valuable. Dr. Cudkowicz noted that two new trials, one of the anti-inflammatory tocilizumab and the other of anti-epileptic retigabine, will be using this type of biomarker.

Other disease process-related biomarkers that involve inflammation were discussed at the meeting, including newly discovered candidates presented by several researchers. These promising developments will be explored in more detail in the lab in order to gauge their utility in clinical trials.

Motor unit number estimation (MUNE) measures electrical properties of muscle-nerve interaction to determine the degree of loss of motor neurons, a direct measure of the disease process. Measurement of MUNE can be done easily in the clinic and is painless for the subject. It is less subject to fluctuation than the ALS Functional Rating Scale, the measure typically used in clinical trials to track disease progression. MUNE has

Research UPDATES

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been used on trials and may become more widely employed. In addition, EIM, or electrical impedance myography, is an emerging measure that has attractive attributes for following disease progression—including excellent reproducibility and ease of measurements, as well as a clear pattern of change with disease state.

Several members of the group spoke about efforts underway in other neurodegenerative diseases, including Alzheimer’s and Parkinson’s. Much of those efforts center on imaging, using markers for accumulation of toxic proteins in the brain. An unmet need in ALS is to develop such a marker for accumulation of the TDP-43 protein, which aggregates in most people with ALS and might be useful for tracking disease progression.

The Importance of BiosamplesThose at the meeting agreed that current efforts at collecting biosamples from people with ALS should be continued and strengthened. Samples such as blood and cerebrospinal fluid collected during a trial can be analyzed, even well after the end of the trial, to determine if some aspect of the disease process was altered by treatment. The Northeast ALS Consortium (NEALS), the clinical trial consortium, is standardizing collection procedures for biosamples, a critical part of the process to ensure that the samples are preserved with uniform consistency across the different centers. In conjunction with these efforts, NEALS, through its NeuroBank initiative, has developed a web-based patient identification system so that individual samples collected at different times from the same person can be correlated—even if the samples are in different centers and were collected in different trials.

Cerebrospinal fluid (CSF) has yielded “probably the best characterized biomarkers in ALS,” according to Robert Bowser, PhD, of Barrow Neurologic Institute. Neurofilaments, which are part of the cell’s structural skeleton, are also found in the CSF. The amount and types of specific neurofilaments in the CSF are characteristic of ALS and may find

use in early diagnosis. They may also be useful for establishing prognosis early on.

Cooperation and Directions for the FutureMembers agreed that increased cooperation could speed development of multiple initiatives. For instance, members of the group will work jointly to standardize operating procedures in the collection of biosamples. Harmonizing data collection during studies will also be useful, as it will allow analysis of larger data sets in the future. Federal funds may also be available to help catalyze these efforts.

“This is an extraordinary moment in ALS, with advances in genetics and significant work on biomarker development,” Dr. Brown said. “We are poised for major progress here.”

May 29, 2014Moving Forward on Biomarker Development to Speed Clinical Trials

Continued

On April 1, the Centers for Medicare and Medicaid Services (CMS) changed the manner in which it pays for speech generating devices (SGDs). Under the change, called “capped rental,” PALS who need SGDs and are covered by Medicare will be required to rent them over a 13-month period, after which time they will own the device. Under the previous policy, people with ALS had the option to purchase SGDs upfront, which is how the vast majority of Medicare-covered PALS obtained SGDs. The payment system change does not apply to anyone on Medicare who currently owns an SGD. Capped rental also does not affect which devices Medicare will cover, or the evaluation and documentation required to support Medicare coverage.

Updated: April 1, 2014Medicare Coverage for Speech Generating Devices

While this switch may seem to be a minor change in policy, it may have significant impacts on patients. Those impacts include:

Access: If people have an extended hospital stay or are in hospice or a nursing facility while they’re in the 13-month rental period, Medicare will not cover the rental fees. Instead, the device could be returned to the manufacturer, forcing the patient to either obtain a new one from the hospital or hospice, or pay the entire monthly rental fee out-of-pocket.Cost: People who rent SGDs for the full 13-month rental period will pay 5% more out-of-pocket than if they had purchased the device.Dedicated devices: Medicare currently does not pay for “non-medical” software that may be included on computer or tablet-based SGDs, such as email or word processing software. Therefore, these features are “locked” when a patient first purchases the SGD. However, once the patient owns the SGD, they subsequently may have the manufacturer “unlock” these additional features by paying a fee, which again is not covered by Medicare. Under capped rental, it’s possible that these additional features may not be permitted to be unlocked until after the 13-month rental period.

The ALS Association has actively opposed this change since CMS first proposed it in mid-2013. We’ve submitted formal comments to the agency (http://bit.ly/1h2e2X8), met with agency officials, and partnered with other organizations, industry leaders and Members of Congress to urge CMS not to make this change. Key Members of Congress have also expressed concern to CMS, including sending a letter (http://bit.ly/1lX98PA) to the agency in March.

Unfortunately, despite the widespread opposition from more than 170 organizations and Members of Congress, CMS has chosen to implement the new payment system—without making any changes.

Research UPDATES

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Next StepsThe Association is currently working with our partners to pursue all avenues for changing the new payment system. This potentially includes introducing legislation or amending existing legislation in Congress that would address our concerns with capped rental, working with Congress to exert additional pressure on CMS and possibly launching a public awareness campaign.

At this time, legislation to address the problems with capped rental has yet to be introduced in Congress. The Association is aware that some are urging advocates to promote H.R. 942 and S. 948 as solutions to the problems. While The ALS Association strongly supports that legislation and endorsed the bills when they were introduced several years ago, neither bill currently would impact the new capped rental regulations nor change Medicare coverage policy—capped rental or otherwise—related to SGDs. The bills would create a separate benefit category for complex rehab technology (CRT), such as the customized power wheelchairs needed by people with ALS. The bills do not address capped rental, in part, because they were introduced several years before CMS proposed the new regulations and because people continue to have the option to purchase complex chairs—something The Association strongly urged Congress to preserve in 2009. Instead, the bills are designed to address Medicare’s coverage policies for CRT because those policies do not appropriately recognize the differences between complex durable medical equipment (DME) and standard DME.

Your Help is Needed!As the legislative and regulatory processes move forward, we will let you know when your outreach is most needed and can have the maximum effect. Unlike regulatory advocacy, where grassroots outreach generally is not an effective advocacy strategy, legislative advocacy involving grassroots campaigns can be extremely effective. That’s because Members of Congress work for you and are elected by you. However, this outreach must be strategic, share a consistent message with our partners and be timed to launch when we have the best opportunity to realize success on Capitol Hill. Our goal is not simply to reach out to Congress or others for the sake of conducting a grassroots campaign. Rather, our focus is to ensure that a grassroots campaign accomplishes the goal of providing access to SGDs when and where people with ALS need them. If outreach is not strategic, focused and coordinated, we may lose the best opportunity to succeed.

As we work to address the problems with capped rental, if you or someone you know experiences any difficulty accessing SGDs or other DME, such as power wheelchairs or accessories, please contact your local ALS Association Chapter immediately. Chapter contact information is available here: alsa.org/community. If you do not have a local Chapter, please contact The ALS Association’s Public Policy Department at advocacy@alsa-national.org. The Association will actively provide assistance to anyone experiencing difficulties accessing these devices and will also share these difficulties with CMS officials and Members of Congress, so that they fully understand how policy changes impact people with ALS and why they must change.

Updated: April 1, 2014Medicare Coverage for Speech Generating Devices

Continued

Little is known about the role genetics play in ALS. In order to find out more, researchers need biological samples like blood or tissue from persons living with ALS (PALS). ATSDR is coordinating a feasibility study called the National ALS Biorepository Pilot Study to find the best way to collect and store these samples.

What is a biorepository?A biorepository is a national bank of biological samples like blood or tissue. The National ALS Biorepository Pilot Study is considered the first step toward creating a bank of ALS biological samples associated with the National ALS Registry.

What is the National ALS Biorepository Pilot Study?The National ALS Biorepository Pilot Study will explore the feasibility of collecting and storing biological samples, such as blood or tissue, from PALS who are enrolled in the National ALS Registry and who volunteer to participate in the pilot study.

The National ALS Registry helps persons with ALS and researchers learn more about the disease. Connecting samples to information already being collected from PALS will make the Registry more complete. A biorepository may help scientists better understand the cause(s) of ALS by providing researchers with access to ALS biological samples. These samples may be studied along with demographic and other environmental and occupational data currently being provided by PALS.

With help from outside experts, ATSDR developed a plan for creating a biorepository. This plan describes the best ways to collect, store, and share biological samples. Once the pilot study has been completed, ATSDR will decide if a national ALS biorepository is practical.

Source: (cdc.gov/als/ALSBioRegistry.aspx)ALS BIOREPOSITORY

How does the National ALS Biorepository Pilot Study work?The pilot study enrolls PALS taking part in the National ALS Registry into one of two components:

• The biospecimen study component involves the collection of blood, urine, hair and fingernail clipping samples collected from 300 PALS in their homes.

• The postmortem study component involves the donation of brain; spinal cord; cerebral spinal fluid; and pieces of muscle, skin, and bone from 30 PALS after they have died.

How can I learn more?For more information or to volunteer, please contact the National ALS Biorepository Pilot Study at (855) 874-6912.

Other Information:Participating in the National ALS Biorepository Pilot Study is voluntary. Only PALS who are enrolled in the National ALS Registry are eligible to participate in the study. McKing Consulting Corporation is conducting the National ALS Biorepository Pilot study on behalf of ATSDR and may be contacting PALS about participating.

Research UPDATES

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The ALS Association Wisconsin Chapter is proud to announce that The ALS Certified Center of Excellence at Froedtert and the Medical College of Wisconsin has successfully received recertification as a Certified Treatment Center of Excellence by The ALS Association National Office.

This is the highest level of recognition under The ALS Association Certified Center Program as defined in the Center Program guidelines:

The ALS Association Certified Treatment Centers of Excellence (formerly Certified Centers of Excellence) meet all of the required criteria that comprise comprehensive treatment and actively participate in IRB-approved ALS-specific research, therefore achieving the “gold standard” of certification through The ALS Association.

The Froedtert ALS Clinic received initial certification as an ALSA Certified Center of Excellence in March 2006 and has continued to develop and grow under the direction of Paul Barkhaus, MD, Clinic Director. Dr. Barkhaus and his Clinic team form a strong multidisciplinary group that works closely together to provide each patient and family with the resources and support needed to manage ALS. The Chapter provides not only financial support for the Clinic, but also the support of two Care Services Coordinators from the Chapter who provide Social Work support and Chapter resources—as well as support during and in-between Clinic visits, for complete continuity of care. Dr. Barkhaus and the team, along with the partnership of the Chapter and The ALS Association, continue to evaluate the Clinic program for possible improvements and ways to enhance the experience for patients and families.

The Chapter is committed to the success and growth of The Froedtert Hospital Certified ALS Treatment Center of Excellence, and we congratulate Dr. Barkhaus and his team for their successful recertification!

Froedtert /Medical College of Wisconsin ALS Clinic Recertified as Certified Treatment Center of Excellence

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Dear Chapter Members,Summer is passing so quickly, my hope is that all of our Chapter members and families are getting a chance to enjoy it! It seems that it’s not just summer that has passed quickly, but time in general as we are already looking forward to our Fall and Winter Care Services programs/events.

But before we do that, it’s important to recognize our special program which was held last May—our 10th Annual ALS Care and Research Symposium. Despite the various college and high school graduation conflicts, we had a wonderful turnout of over 100 attendees, along with 21 exhibitors from area businesses and organizations. Please see our listing of the exhibitors who joined us this year—they do a great job of providing information and resources to our attendees. Some have been supporting us since the very first symposium ten years ago, and several have been with us over five years. We appreciate their commitment and support of this event! The symposium also could not happen without the hard work of our volunteers, who are willing to fill in wherever needed—including help with registration, exhibitors, the National ALS Registry table and many other areas. We appreciate the gifts of their time and talents. You are invaluable!

Michael Benatar, MD, PhD, from the University of Miami, was our keynote speaker and provided an extremely interesting presentation on the current challenges in ALS Research, the advances in genetic research and how the knowledge gained through those advances may have a benefit and effect on the future of ALS Research. He also spoke on the state of ALS research in the United States and worldwide. I, for one, left with a feeling of hope that the pieces are coming together and that we’re getting closer to putting an end to ALS. We sincerely thank Dr. Benatar for joining us and sharing his presentation, as well as conducting Grande Rounds at Froedtert/Medical College of Wisconsin the day prior to the event.

Many thanks to Paul Barkhaus, MD, for his support and commitment to this event for the past ten years. Wanting to raise awareness and create an informational ALS forum for his patients, our Chapter members and families, and other healthcare professionals, Dr. Barkhaus worked closely with me and the fledgling ALS Clinic team in the development of the 1st Care and Research Symposium in

2005. Since that time, he has continued to work hand-in-hand with the Care Services Staff in planning the symposium and recruiting the keynote speakers. Being the 10th year, the Care Services staff felt it was fitting to honor Dr. Barkhaus for his commitment, and we were determined to be as original as the doctor himself. Because he’s extremely busy and does the work of at least two people, the Care Services Staff, on behalf of The ALS Association Wisconsin Chapter, presented Dr. Barkhaus with his own special Mini-Me award. Although this doesn’t literally give him another helper, we hope that he’s aware of our immense appreciation and fully realizes his value to the Chapter and the patients and families we serve.

Special thanks also to our afternoon panel leaders: Katie Koutnik MS, CCC-SLP, Suzi Bloedel MS, CCC-SLP and Janie Strutt MS, CCC-SLP; Speech Therapists and Augmentative Communication Specialists from Froedtert Hospital, Milwaukee VA Medical Center and The CP

Director of Care Services:Lori Banker-Horner

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Center in Green Bay, respectively. They presented a very informative program on “Enhancing Communication with ALS” and were joined by special Chapter member panelists Sheila and Loren Salsman and Jack and Patricia Osol. Sheila and Jack—both communication device users—shared their insight on the benefits and challenges of aug com. The feedback from this presentation was wonderful, and having individuals share their own personal experiences provides a unique and invaluable perspective. We thank all the individuals involved in putting this program together.

For those of you who were not able to attend and would like to view a DVD of the symposium, please contact Janet Gauger, Care Services Assistant, at (414) 831-3984 or janet@alsawi.org.

Save The Date: for next year’s symposium: May 2, 2015!

As always, if you have questions, concerns or may be looking for resources and support for yourself, a family member or friend, please don’t hesitate to contact us. We are here for you.

Many thanks to our exhibitors for the 10th Annual ALS Care and Research Symposium. We sincerely appreciate your continued support of the symposium and of our Chapter members and families. You are an invaluable piece in making this event a success!

A&J Mobility | Accessible Wear | Bridgeway Independent Living Designs | DynaVox Mayer-JohnsonHeartland Home Health and Hospice | HME Home Medical | Hometown Hospice and Homecare

Hospice Advantage | Knueppel HealthCare Services | Mobility Works | NuMotion | Paralyzed Veterans of AmericaPhilips Respironics | Quantum Rehab | ResCare Home Care | RespirTech | Synergy Home Care

Talk to Me Technologies | Tobii Assistive Technology | Vitas Innovative Hospice Care | Walgreens Infusion Services

ALSCare & Research

Symposium

ALSCare & Research

Symposium

10th Annual

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The ALS Association Wisconsin Chapter is very sad to say goodbye and good luck to a special individual who has been an extremely valued, integral and strong partner with our Care Services team. Cedric Dennis, RN, BSN, Nurse Coordinator of the ALS Certified Treatment Center at Froedtert Hospital/Medical College of Wisconsin, will be leaving his position at Froedtert Hospital as of July 1, 2014. Cedric has worked closely with the Chapter and Froedtert in the development, growth and initial certification of the ALS Clinic at Froedtert/Medical College of Wisconsin.

Lori Banker-Horner, the Chapter’s Director of Care Services, shared:I have been so lucky to have been able to work closely with Cedric for over 10 years. He has been a wonderful support, not only to our Chapter members and families, but also to the Chapter as a whole and to me personally. Working side by side with Cedric and Dr. Barkhaus in the development and the reality of ALS Clinic certification in 2006 was an exciting and memorable experience. Cedric was totally committed to this goal and the patients and families we served. He knew what needed to be done and did it. He was a total and valued partner with the Chapter and he will be missed by all. We wish him all good things with this next chapter in his professional life.

A few words from Dr. Paul Barkhaus:Sometimes one can recall when they first had met someone. In the case of Cedric Dennis, it seems that he has always been part of my professional life at Froedtert since the millennium arrived. He has been an integral part of the ALS Program almost since its start in the late 1990s. He has continued to serve the Program in multiple ways that are not always so obvious. In my case, it is how he makes my patient management seem so effortless. This is because he has such an uncanny knack for quickly analyzing problems and knowing how to resolve them expediently. So I know that the next few weeks may be challenging as the nurse now assigned to replace him, Ms. Stacey Martinetti, assumes Ced’s role. But I have full confidence that Stacey, who is an experienced neuromuscular nurse, will continue Ced’s tradition of superb patient care.

So we are not saying goodbye to Cedric as that implies some finality. Rather we’ll say, “So long-,” and wish him well in his next challenge. I hope he’ll be around to make the October Walk with us and otherwise stay in touch with our PALS community!

FAREWELL to A Friend and Colleague

farewell

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Cedric also shared his thoughts on his departure:It is with a heavy heart that I announced in June that I had decided to leave Froedtert Hospital and my role as the ALS Clinic Coordinator.

It was a very hard decision to make as this has been my employer for the last 21 years and working with the The ALS Association Wisconsin Chapter for the last 12 years.

I would like to thank all the staff and volunteers from the ALS Association for all their support and hard work. This is a great group who make a tough task look easy.

I cannot forget the ALS Clinic staff who I work with at Froedtert as well. Without them I could not have looked so good. This was the greatest team of care givers and professionals that were ever assembled.

I would also like to thank all the patients and family members who I have had the privilege of getting to know throughout the years. All of you have helped me grow professionally and personally as a human being. I have always enjoyed assisting anyone to try to cope and deal with this disease as best as I could and offer any tricks of the trade I knew.

I will still stay active as a volunteer, or participant in the local ALS events. My wife and daughter are still planning on doing the ALS Chapter Holiday Party crafts for the kids with the Girl Scouts.

Thank you to all and I will miss all of you.Cedric Dennis BSN,RN

Again, thank you Cedric. We look forward to seeing you down the road.

friend

Save The Dates!UPCOMING SUPPORT GROUP GATHERING

Saturday, September 13, 201411am to 1 pm

Cindi Pichler, Assistive Technology Coordinator for Independence First in Milwaukee and a member of The Wisconsin Chapter’s Medical Advisory Board, will be presenting an informative, hands-on demonstration of various assistive devices currently available to help with day to day needs both inside and outside the home.

In addition to having the opportunity to “try a gadget,” Cindi will be available to answer individual questions. We encourage you to bring your own creations and ideas that have worked for you to share with other attendees!

Come and see Independence First’s completely accessible state of the art offices!

* This program will be taking the place of our regularly scheduled Milwaukee Area ALS Support Group held at Froedtert Hospital.

To RSVP or for more info, please contact Mary DeFrain-Jones at 414.405.2102 or e-mail her at mary@alsawi.org

For the Annual “TRY A GADGET” Program

Independence First540 South 1st StreetMilwaukee, WI 53204

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THE FOLLOWING ARE THE MEETING LOCATIONS FOR OUR ALS CAREGIVER DINNER OUTINGS. The group meets the fourth Thursday of the month at 7 pm. This is a special group for all individuals who are in a caregiving role for a loved one, family member or friend with ALS. It is a chance to share with others, give and receive support, and find out good information and tips in a very relaxed environment.

Please contact Robin Stanczyk at 262.402.8148 or robin@alsawi.org to RSVP for the dinner outing or for more information. We are looking forward to seeing you!

Thursday September 25, 2014Quaker Steak & Lube4900 South Moorland RoadNew Berlin, WI 262.754.9090

Thursday October 23, 2014Saz’s State House Restaurant5539 West State Street Milwaukee, WI 414.453.2410

Thursday November 20, 2014 Caregiver Holiday DinnerRadisson Milwaukee WestJimmy’s Restaurant 2303 North Mayfair Road Wauwatosa, WI414.257.3400Please note—this is the 3rd Thursday of November due to Thanksgiving.

ALS Caregiver DinnerGROUP MEETING LOCATIONS

Support Groups & MEETINGS

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Support Groups & MEETINGS

*WISCONSIN ALSA CHAPTER SPONSOREDProvides support for people with ALS, their families, friends and caregivers.

*Milwaukee ALS Support GroupDate: Second Saturday of each monthTime: 11:00 am to 1:00 pmPlace: Froedtert Memorial HospitalConference Room NT 2209Address: 9200 West Wisconsin AvenueMilwaukee, WisconsinUse lot on the right of the main entrance off 92nd street. Handicapped parking lot is located on the South side of the hospital.Contact: Mary DeFrain-Jones at 414.831.3990 or email her at mary@alsawi.org

*Milwaukee ALS Caregivers Support GroupDate: Fourth Thursday of each monthTime: 7:00 pmPlace: Locations vary—locations are available on the alsawi.orgThis group meets monthly at area restaurants for support and to discuss issues related to caring for people with ALS.Contact: Robin Stanczyk at 414.831.3989 or email her at robin@alsawi.org

*Fox Valley ALS Support GroupDate: Third Tuesday of each monthTime: 6:30 pm to 8:00 pmPlace: All Saints Lutheran ChurchAddress: Highway 21Oshkosh, WisconsinOne mile West of Highway 41Contact: Diane Fergot at 920.279.4449 or email her at diane@alsawi.org

*Central Wisconsin ALS Support GroupDate: Second Monday of each monthTime: 6:00 pm to 7:30 pmPlace: St. Luke’s ChurchAddress: 2011 10th Street SouthWisconsin Rapids, WisconsinContact: Deb Roberts at 715.886.5860 or email her at vegtales@wctc.net

*La Crosse Area ALS Support GroupDate: First Saturday of each monthTime: 3:00 pm to 5:00 pmPlace: Gundersen Lutheran HospitalPatient Education Room—1st Floor Main Clinic BuildingAddress: 1900 South AvenueLa Crosse, WisconsinContact: Connie Troyanek at 608.788.0670 or email her at cltroyanek@gmail.com

*Northeast Wisconsin ALS Support GroupDate: Second Wednesday of each monthTime: 6:00 pm to 8:00 pmPlace: Options for Independent LivingAddress: 555 Country Club RoadGreen Bay, WisconsinContact: Carolynne Younk at 920.288.7095 or email her at cyounk@alsawi.org

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Northwestern WI (Chippewa Falls) ALS Support GroupDate: Second Thursday of each monthTime: 1:00 pm to 3:00 pmPlace: Chippewa Valley Bible ChurchAddress: 531 E. South AvenueChippewa Falls, WisconsinProviding support for people with neurological diseases, families, friends and caregivers.Contact: Julie Chamberlain, LPN, at 715.271.7257 or email her at alsnwwi@gmail.com

Rockford Area ALS Support GroupDate: Fourth Saturday of each monthTime: 12:00 pm to 2:30 pmPlace: OSF St. Anthony Medical CenterAddress: 5666 E. State StreetRockford, IllinoisContact: Tony Cook at 312.257.5434

ADDITIONAL SUPPORT GROUPS AND MEETINGS

Milwaukee Ventilator Users Support GroupDate: First Tuesday of each monthTime: 6:30 pm to 8:00 pmPlace: St. Mary Hill Hospital, Long Term Respiratory UnitAddress: 2323 North Lake DriveMilwaukee, WisconsinProvides support for people on ventilators, their families, friends and caregivers in the Milwaukee area.Contact: 414.352.2185 or 414.963.9686

Milwaukee MDA Support GroupDate: Third Monday of each monthTime: 7:00 pm to 9:00 pmPlace: Froedtert Memorial Hospital Conference Rooms A and BAddress: 9200 West Wisconsin AvenueMilwaukee, WisconsinProvides support for people with neurological diseases, their families, friends and caregivers in Southeastern Wisconsin.Contact: 414.453.7600

Madison MDA/ALS Support GroupDate: Second Tuesday of each month Time: 12:30 pm to 2:00 pmPlace: Dean ClinicAddress: 700 S. Park StreetMadison, WisconsinGroup meets in Deli Room 1, next to Fit N Fresh, on the Lower LevelContact: Mary at 608.222.3269

Duluth-Superior Area ALS Support GroupDate: Fourth Tuesday of each monthTime: 1:00 pm to 2:30 pmPlace: First Street Clinic (Aurora Room)Address: 420 East First StreetDuluth, MinnesotaThird floor parking ramp on First Street, West side of building; Skyway to building on second level.This group breaks into two groups (PALS and families/friends/caregivers) on a quarterly basis or as requested. Refreshments are served. Contact: For questions or to RSVP call 218.786.5399

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With the Chapter’s growth throughout Wisconsin, we are continually working on ways in which to ensure that all of our programs are readily available to everyone. One of the most highly utilized Chapter programs is the Equipment Loan Program. The Chapter has a large inventory of a variety of durable medical equipment from shower stools to electric wheelchairs that are

available for loan at no cost to individuals who live in Wisconsin, are diagnosed with ALS and are registered with the Chapter. We have had wonderful partnerships with organizations around the state who have donated space along with their staff time and expertise to make sure this program is accessible to our Chapter members. We want to recognize these organizations who have been so invaluable to the growth and services of the ALS Association—Wisconsin Chapter’s Equipment Loan Program for many years. They have been and will continue to be wonderful partners in our service to Chapter members and families.

Our Equipment Loan Program now includes another great partner! NuMotion, a national durable medical equipment company, has provided significant space and extra assistance; which has allowed the Chapter to combine the Milwaukee area’s power and non-power equipment (previously stored at Barrett Moving and Storage Company in Waukesha and Knueppel Healthcare in West Allis) in their Oak Creek and Madison sites. This consolidation will allow our Chapter members throughout the state, more access to our equipment loan program. The transfer of the equipment was done in late November 2013 and the program is up and running in the new site at NuMotion in Oak Creek.

The Wisconsin Chapter offers sincere thanks to Jim Castino and staff of Barrett Moving and Storage Company for over 10 years of unbelievable service and support, along with the donation of a large storage space. They also generously donated their time and trucks to assist with the recent transfer of equipment. Everyone at Barrett was ready to help in any way possible and we know will continue to be a partner in the years to come!

The Chapter also cannot say thank you enough to Cindy Ciardo and staff of Knueppel Healthcare, Inc. who worked along-side of Chapter staff to ensure that Chapter members received the best care and the most appropriate power equipment possible from the loan equipment stored at Barrett. From technicians, to billing to front desk to management—Knueppel’s professionalism and commitment to care made a true difference. We look forward to our continued partnership and we can’t thank them enough.

The ALS Association Wisconsin Chapter depends on wonderful partnerships such as these and we appreciate and sincerely thank everyone in these organizations for sharing their time and expertise and resources. We could not do what we do without them.

If you have questions on the Chapter’s Equipment Loan Program or are in need of a piece of equipment, please contact Robin Stanczyk, Care Services Coordinator at 262.402.8148 or robin@alsawi.org.

Barrett Moving and Storage Company

Knueppel Healthcare, Inc.

Reliant Rehab – Appleton, Eau Claire and Onalaska offices

CHAPTER EQUIPMENT LOAN UPDATE!

CARE CONNECTIONAre you feeling overwhelmed by the responsibilities weighing you down as a primary caregiver? When people ask, “What can I do to help?” do you just shrug and dismiss the question because you don’t know where to begin? Do you find yourself struggling to keep up with ALL the household duties in addition to personal cares with your loved one as ALS progresses? If this sounds familiar, you need a Care Connection!

In September 2012, The ALS Association National Office introduced this program to provide tools for families and friends to enable them to build a successful supportive caregiving network for their loved ones. In spring 2013, at the annual ALS Care and Research Symposium, we introduced this approach to our Wisconsin Chapter members. Our Care Services staff provides training and support to those who wish to implement this approach.

We encourage families who are living with ALS to consider using Care Connection to help manage care responsibilities. Based on the model developed in the book “Share the Care” by Cappy Capossela and Sheila Warnock (1995), Care Connection provides a process to organize a team of volunteers to lend a hand and lighten the load. ALS presents unique care challenges, especially as the disease progresses toward later stages, and a Care Connection team can greatly ease the burden on the primary caregiver.

The key to a successful team is enlisting an energetic and well organized friend or family member to lead as the Care Connection Coordinator (CCC). Ideally, this person is not the primary caregiver but, rather, someone outside the immediate family who doesn’t have the responsibility for day-to-day care provision. With support from Care Services staff, the CCC works with the family to identify tasks/activities they’d like help with and to generate a list of potential volunteers to be Care Connection participants. These participants might be neighbors, friends, church members, anyone who is interested in helping out in some way. The CCC meets with the participants to provide information about the family’s needs and circumstances and gathers information from them about their skills and interests. The CCC creates a schedule of tasks and participants sign up; this can be done manually or using a special care support website like www.lotsahelpinghands.com/.

The Care Connection program provides the link between those who reach out to support the family and the ALS family who needs their support. By using this approach, the primary caregiver has more personal time to take care of his or her own needs, others are given meaningful opportunities to provide assistance, and the person with ALS benefits from increased interactions with people who care. It is truly Win-Win-Win!

If you have any questions or would like more information on the Care Connection program, please contact Care Services Coordinator Diane Fergot at 920.279.4449 or diane@alsawi.org.

Care Services UPDATE

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Agency for Toxic Substances and Disease RegistryDivision of Health Studies

Lou Gehrig TM licensed by the Rip Van Winkle Foundation:

www.LouGehrig.com

Facts about ALSMany people know ALS as Lou Gehrig’s disease, named after the famous baseball player who had to retire in 1939 because of it. ALS is a disease that causes nerve cells to stop working and die. This leads to muscle weakness, paralysis, and eventually death.

No one knows what causes most cases of ALS. Scientists may find that many factors together cause it.

What is the National ALS Registry?The National ALS Registry is a program to collect, manage, and analyze data about people with ALS. It is important to include as many people with the disease as possible to get the most accurate information.

Because learning more about ALS is an important step in the battle to defeat it, the Agency for Toxic Substances and Disease Registry (ATSDR) has developed this registry to gather information from people who are living with ALS. This information can help doctors and scientists learn more as they work toward a cure.

The goal of the registry is to gather information that can be used to

• estimatethenumberofnewcasesofALSeachyear,

• estimatethenumberofpeoplewhohaveALSata specificpointintime,

• betterunderstandwhogetsALSandwhatfactorsaffect thedisease,

• examinetheconnectionbetweenALSandothermotor neurondisordersthatcanbeconfusedwithALS, misdiagnosedasALS,andinsomecasesprogressto ALS,and

• improvecareforpeoplewithALS.

The National Amyotrophic Lateral Sclerosis (ALS) Registry

ToLearnMore,ortoRegister,Visit

www.cdc.gov/als

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Formoreinformation,pleasecontact:ATSDR

4770 Buford Hwy NE Atlanta, GA 30341Phone: (800) 232-4636

TTY: (888) 232-634824 Hours/Every Day

Email: cdcinfo@cdc.govwww.atsdr.cdc.gov

How does the National ALS Registry work?Information in the National Registry comes from two main sources: people living with ALS and existing national databases.

People living with ALS can visit www.cdc.gov/als to participate in the registry. They will be asked questions about things like their health, job, and family histories.

ATSDR is coordinating with the Centers for Medicare and Medicaid Services and the U.S. Department of Veterans Af-fairs to gather information from their databases.

Selected states and cities will also gather data about the number of people in their areas diagnosed with ALS. Data from these smaller scale projects will be used to evaluate the completeness and accuracy of the data in the National ALS Registry.

Whataboutprivacy?Registry information will be stored on a secure web portal. That means only certain ATSDR researchers will have access to the data as they are collected.

Doctors and scientists requesting registry data will not have access to information that would identify individual patients. Any information that is published about people in the registry will only be group information and will not identify you.

Whatcantheregistrydoforme?The main purpose of the registry is to gather information that can be used in the fight to defeat ALS. Even so, you can find important information at the registry website. Resources available through the registry include

•clinicaltrialsinformation,

•ALSclinicinformation,

•factsheets,

•reportsandjournalarticles,and

•continuingeducationcreditsforhealthprofessionals.

CS209157-A

Visit the Registry Website

www.cdc.gov/als

3rd Annual Chasin’ A Cure—Our Best Yet!The outcome of the Brewers game aside, this year’s Chasin’ A Cure tailgate was a huge success. Not only did the event sell out, the band rocked, the food and drinks were amazing, and the weather was perfect!

After the tailgate, Trickett Wendler’s husband Tim and son Tanner were on the field to throw out the first pitch of the game and help put our cause in the spotlight.

This year’s event not only raised $27,000 for families suffering from ALS, it also raised our expectations for another successful outing next year.

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More than 1,000 people came out to collectively spread ALS awareness and help us get closer to finding a cure.

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HOPEJULY 11 | TAILGATE @ 5:30 PM VSALS.ORG

It was the Lookers and Dreamers and Doers and Revelers vs. ALS, the Hipsters and Hopesters and NeverGiveUpsters vs. ALS,

the Die Hards and Newbies and Believers and Us and You vs. ALS. Thank you for sharing your voices. They were definitely heard.

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The money raised for the event goes directly to Care Services to benefit Individuals with ALS and families in the State of Wisconsin.

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BEHIND THE SCENES:

It’s Hipsters and Hopesters and NeverGiveUpsters and Jim Henderson and

US vs. ALSBy: Natalie Jansky

July marked the 75th anniversary of Lou Gehrig’s legendary retirement speech, which was given during a time when few people had heard of ALS. Today, Gehrig remains an inspiration. He represents fortitude and humility to the thousands of Americans who are battling the disease that has been tied to his name since 1939.

It’s a disease that the Milwaukee Brewers relief pitcher, Jim Henderson, knows well. His 51 year-old Dad, Neil, battled it for less than two years and passed away in 1996—just 14 years after Neil’s Mom lost the same fight. Henderson learned from it all and I imagine it’s what helped to make him the type of person he is today.

After all, he was only 13 years old at the time. “I watched his battle and how he remained strong, especially for a young kid like me,” Henderson said. “He always had a good attitude. That’s what I remember the most about him.”

Henderson took that attitude and carried it with him, using it to get him to where he wanted to go. A mentor-like figure for Henderson who has known him since Little League, John Ircandia, said the following during an interview in April of 2013:

“ You think he’s a mild-mannered kid, which he is—very respectful, very grounded, very mature, not an ego guy at all,” he said. “But behind all of that, you won’t find a stronger competitor. He’s determined and he hates to lose.”

When asked what advice he’d give to ALS patients and their loved ones, Henderson shared what his Dad said to him: “Keep looking forward. Keep going and keep fighting.” And Henderson has, especially during the toughest parts of his journey to the Major Leagues. He knows his Dad is watching over him and proud of all that he has accomplished to turn his dream into a reality.

There’s no doubt that Neil is also proud that Henderson is helping to raise much-needed awareness about ALS so that patients will some day have a different fate than the one Jim’s Dad and Grandmother shared with Gehrig.

Until then, we’ll keep fighting—with class acts like Jim Henderson on our team.

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HumanThe

The Joe Schulz Story

By: Natalie Jansky

Photos by Nick Collura | nickcollura.com

Spirit / 39

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When the word “unfortunately” left his doctor’s mouth on October 25, 2013,

Joe Schulz didn’t need to listen to what followed. He knew it meant that he was receiving the same life-shattering news approximately 5,600 people receive each year—an ALS diagnosis. The tell-tale signs began six months before, when Joe lost the ability to grip a softball bat with his left hand. His friends suggested that he see a doctor, not anticipating the number of times he would ultimately need to see chiropractors and physical therapists that summer.

When fall rolled around, Joe still didn’t know what had caused his sudden weakness, nor why he still hadn’t regained his strength. It was then that his friend Susie suggested he visit a specialist at Froedtert Clinic, where he was told there was a 95 percent chance that he and Lou Gehrig would have more in common than just the love of baseball.

“ We immediately hoped that he was a part of that remaining five percent,” Susie said. “When we found out he wasn’t, I felt like I couldn’t breathe. I was horrified.”

But Joe saw his diagnosis from a different vantage point. “I haven’t gotten angry or asked, ‘Why me?’” Joe said. “Why anyone? Better me than someone who’s a husband and father.”

This mindset doesn’t surprise his closest friends, who say he’s the type of person who has never let sadness or negativity overcome him when facing adversity. “He’s remarkable,” Susie said. “He spreads joy wherever he goes.”

Which is one of the reasons his colleagues at Lightning Pick, his workplace for the past ten years, were so sad to see him go. “I visited him in his office just minutes after he found out about the

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“UNfortunately”

“The human spirit was very much

alive.”

diagnosis, and I was devastated,” says his friend and colleague Darin. “We shared a long hug, as news like that leaves you with nothing to say.”

And while Joe never expected to retire at 51 years old, he decided to take the time to set out on one last epic adventure. The reason was profound: “I’m trying to squeeze years out of days,” he said.

He took a solo trip along parts of Route 66—the legendary road that passes through some of the country’s most archetypal roadside scenes. He drove 6,800 miles in three weeks, meeting

up with old friends along the way, but also using it as an opportunity to find some solace in solitude and nature. And yet, he couldn’t help but make some new friends too. Especially after deciding to write a message on his truck’s window: “My last trip before ALS steals my freedom.”

The trip then took an emotional turn, as that message inspired others to share their ALS stories with Joe. Along with picking up his restaurant tabs, insisting that he not worry about accepting souvenirs as gifts, and offering help carrying his belongings to and from his truck.

“ The human spirit was very much alive,” Joe said.

When his trip came to an end, it was a bittersweet time. He was happy to be back in the home his dad built, but knew he could never do something as independent as taking a solo trip again. He realizes that soon he’ll have to rely on other people to help him with all the things he once did by himself, which will be quite a role reversal for him.

“ You’ve never had to ask Joey to help,” says Darin. “He’s always offered it when you’re in need, and he never keeps score.”

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“I’ve never been one to take losing lightly, so I’m going to fight this disease as best

as I can”.

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Susie agrees, adding: “Joe’s the helper who’s always been there for every single person in his life. Few people are lucky enough to know someone like him.”

Joe feels lucky, too. “Even though I’m dying, I feel truly blessed,” he said. “I’ve lived an amazing life and have no regrets. Only experiences.”

When people ask Joe what they can do to help, he doesn’t request much. Instead, he tells them to appreciate little moments. “Slow down and disconnect,” he says. “Enjoy your kids, take walks in the park, stop to look at sunsets and reflect on your blessings.”

Joe can no longer work on house projects, entertain his friends’ kids with backflips and dance moves, hit homers at weekly softball games or take his two dogs—Jake and Elwood—on long walks. But he can still be that guy who makes his friends and family feel unconditionally loved.

“This disease will take my body,” Joe says. “But it won’t take my heart and my soul, my ears or my eyes. I’ll still be able to be a part of peoples’ lives.”

He spoke those words at a benefit his friends held for him last fall, when hundreds of people came to show their support and offer the same kind of help Joe has always been known to give. “It was so overwhelming,” Joe says. “It brought me to tears.”

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And while Joe has had to hang up his softball cleats, this fall he’ll be a part of a new team: Joe’s Jets, at the Milwaukee Walk/Run to Defeat ALS, October 12 at Greenfield Park. Characteristically, his competitive nature has already kicked in.

“ I’ve never been one to take losing lightly, so I’m going to fight this disease as best as I can,” Joe says.

One thing we know for sure, Joe will have plenty of loved ones in his corner helping him do exactly that.

2014JANESVILLE Walk to DEFEAT ALSIts participants described the Janesville Walk to Defeat ALS as one big Love Fest. What an accurate description! Families and friends came together to help Wisconsin ALS patients continue to receive the support and care that they deserve.

This year’s Walk t-shirt says, “Every step is one step closer to a cure.” Collectively, the Janesville Walk participants made one giant leap. Thank you to everyone who took part.

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Paul Ryan stopped to say hi to Jim and Jake Eutizzi at a Memorial Day Parade. Just a couple of weeks prior, Paul also made an appearance at the 2014 Janesville Walk to Defeat ALS. We appreciate the support.

Thank You To PAUL RYAN

BRAD HICKS

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United Nations TalkI know he’d love to be, but he can no longer speak, no longer swallow, no longer move. Travel is becoming very challenging for him.

That doesn’t mean he’s just sitting around though. Not Steve! To the contrary. Steve is organizing an adventure of ALS patients to Africa. He’s challenging Congress on access to high tech equipment for people with physical disabilities. And work was recently completed on a documentary about his amazing journey.

Once in awhile, once in a great while, you meet someone about whom you can say, “My life is better for the meeting.” I’m going to show you a video now that will help you understand how I met Steve Gleason. And then I’m going to tell you why I wish I had never met him.

The story goes on to show how Steve and his wife Michel started Team Gleason and the message “No White Flags”, and how they’ve sent other ALS patients—people who embody the same spirit as Steve—to live an epic life, on amazing adventures.

That was a year and a half ago when I did the story with Steve. I met him, because my brother has ALS.

How many of you know someone who has had ALS? (About half raised their hands). It’s fitting that we’re honoring Steve here at the United Nations today, because ALS knows no boundaries—political, ethnic, racial or socioeconomic.

ALS—also known as Lou Gehrig’s Disease. It was 75 years ago this June, the Yankees player was diagnosed. Seventy-five years, and the prognosis today is the exact same as it was then.

Can you think of a disease—a fatal disease—for which the prognosis is the same today as it was 75 years ago? How is that acceptable?!

My name is Brad Hicks. I anchor the news at a TV station in Milwaukee, Wisconsin. You’ll understand why

I’m here in a moment, but first—why Steve isn’t here.

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No known cause. No treatment. No cure. ALS stands alone.Five to six thousand people will die from ALS this year here in the United States. And they’ll be replaced by another five to six thousand people on the conveyor belt of death.

If 20 passenger jets crashed every year in this country—not because of bad weather, not because of mechanical problems—but simply fell out of the sky for no known reason…plummeting…with no chance for anyone to survive…would we spend just 40 million dollars to find out why?

That’s the funding ALS research gets from the National Institutes of Health.

Do you like your chances getting on that plane?

ALS is not incurable. It’s underfunded.In the story you just saw, Steve said, “Life is difficult for everyone. Finding ways to make life meaningful, purposeful and rewarding—that’s the meaning of this human experience.”

What could be more rewarding…what could be more meaningful…than being part of the solution to find a cure…before a doctor says, “Sheena Paul, David Masters… (read five names off name plates in the audience), I’m sorry, you have ALS. You’re going to die.”

This room is filled with creative, connected, caring people. So when your agency, your company, your organization is called up, or has the opportunity, to help…when you can seize that moment by applying your talents, your ideas, your resources…don’t do it for Steve Gleason. Don’t do it for my brother. Do it for yourself. Think of your own chances getting on that plane, knowing 20 will fall from the sky.

When Steve blocked that punt on that September evening, he changed people’s lives. And in that sense, nothing about him has changed at all. Although he can no longer raise his arms, Steve Gleason is still lifting an entire city. Thank you for recognizing that with this award.

“Five to six thousand people will die from

ALS this year here in the United States”.

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BERNETTE SATURDAY | August 30, 2014WALK CHECK-IN: 9:00 amWALK STARTS: 10:00 amLOCATION:Timeout SportsBar & Grill, 1027 North Rapids RoadManitowoc, WIDISTANCE:3 miles

TEAM

Bernette’s StoryBernette Seiler is an inspiration. She played a huge part in the community and her church by coordinating many fundraising events that helped others in need. Four years ago she was diagnosed with ALS. It has taken her ability to move, speak, and breathe on her own. Now, she is completely dependent on others for her daily care. This walk is in her honor. We want to help her to be able to continue helping other people in need who are affected with this illness. All proceeds from this event are being donated to research to find a cure.

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Mark Fralick, a Wisconsin native and proud alumnus of the Madison Scouts and University of Wisconsin – Green Bay, wrote Opa’s Rhyme for his children. It includes great life lessons that are relevant to every person’s life.

All proceeds from the sale of the book will be donated to our Chapter. Thanks to Mark for the great read and wonderful generosity.

It’s available at Amazon.com® for $6.95.

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By Jim Bauer May, 2014

After 36 years of teaching social studies and coaching high school football,

basketball, and baseball, I retired in 2004 at age 60. I then focused on my other career of managing summer homes here in the Manitowish Waters, Wisconsin area. I remained active playing basketball with friends three times a week, year-round, at Lakeland High School and continued as a volunteer, coaching youth baseball and basketball. Life was good. My wife, Susie, was still working at an elementary school until she retired in 2012. Our son, Jack, and two grandchildren, lived next door. Our two daughters lived in Neenah, Wisconsin and were happy and successful. Three more grandchildren appeared in Neenah, along with numerous grand-furkids (pets). Life was really good.

Then I had shoulder pain and weakness. In March of 2011, I had rotator cuff surgery to repair a bad tear. Little did I know then…but that was the beginning of my physical decline. After four months of painstaking rehab, I was unable to regain shoulder strength and range of motion even though an MRI showed the tear was healed. Eventually, after being examined by two orthopedic physicians as

well as going through another MRI, I was referred to a neurologist in Wausau. After an EMG, a cervical MRI and a lumbar puncture, Dr. Passini, from Acuity Neurology in Wausau, diagnosed my problem as ALS in January, 2012.

That possibility had been in the back of my mind after the shoulder wouldn’t come back, since my dad’s family has a terrible history of ALS. My dad had died at age 57 in January, 1975. At that time, we were told that ALS was not hereditary. Obviously we now know differently. Since 1975, two of my dad’s sisters and two of his brothers have died from ALS. In addition, two of my first cousins and three second cousins have also succumbed to the disease.

Even with all this evidence, I sought a second opinion at the University of Wisconsin, where Dr. Lotz concurred with the diagnosis. I finally accepted the diagnosis and experienced the usual emotions of facing familial ALS—a terminal disease…anger, fear, concern, and sorrow. Anger at the change from the good life to such a “bummer”. Fear of the physical and emotional changes caused by ALS…not a pretty future. Concern for my wife, Susie, who would have to take on the

role of caregiver, rather than enjoying a well-earned retirement. And sadness for my three children and five grandchildren who have a 50% chance of inheriting ALS. (At least from the information we currently have.)

After this initial self-pity, my always-optimistic Susie helped me realize how lucky I was. The neurologists felt that since my Dad’s ALS was slow progressing (he lived for 14 years after diagnosis), mine might be, too. I have had a very happy and rewarding life. I had a career I loved and taught thousands of students/athletes, many who are still good friends today. I have a great wife and family. And August 2014 will be our 45th wedding anniversary.

Updating the two and a half years since my diagnosis, my arms and hands are becoming weaker, limiting activities above my chest. My legs are still quite strong. I walk daily (my dog, Bailey, is happy about that). I can still speak and swallow. Breathing is good. These conditions are very similar to my dad’s ALS. I am a lucky guy. Life is better again. To top it off, we live in “God’s country” (my opinion), here in northern Wisconsin on a beautiful lake with loons, otter, ducks, swans and

with ALSMy Life

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Canada geese—and woods all around, with deer, bear, rabbits, fox, squirrels, chipmunks, etc. Of course, we do get a little snow and cold in the winters.

Since my diagnosis, I have also attempted to help research for ALS, especially for my kids’ sake. Even before I came down with ALS, I had read articles about Dr. Teepu Siddique from Northwestern University Hospital, in the Chicago area, and how he had devoted much of his life to finding causes and a cure for ALS. Because of a friend who is a doctor at Northwestern, I was able to get an appointment with Dr. Siddique in September, 2012. I was surprised and delighted to meet this outstanding man. The following two paragraphs were shared with us by Dr. Siddique’s wife, and include information about Dr. Siddique’s biography:

Neurologist Teepu Siddique, MD, the Les Turner ALS Foundation/Herbert C. Wenske Foundation Professor at the Northwestern University Feinberg School of Medicine, has been the clinician-scientist director of the Division of Neuromuscular Medicine since 1991. Dr. Siddique’s research has focused on the molecular genetics of ALS and ALS with dementia. He has employed a range of strategies to identify several genes that cause inherited ALS, particularly SOD1,

ALSIN, FUS, UBQLN2 and SQSTM1, as well as additional genetic loci. His research team developed the first animal model for any neurodegenerative disease, the SOD1 transgenic mouse in 1993. Since then his team has developed several other models, using them to study disease mechanism and test potential therapies. His recent work with UBQLN2 and SQSTMI demonstrated that a defect in protein degradation pathways is a common disease mechanism in all types of ALS, sporadic as well as inherited, and the ALS-dementias. This has paved the way for targeted, and therefore effective, treatments of ALS. A recent editorial in the journal Neurology, the most widely read and quoted journal in the field, cited both Dr. Siddique’s identification of the first causative gene in ALS in 1993 and his team’s 2010 report of malfunction in the ubiquitin-proteosome system as paradigm shifts in understanding ALS.

Dr. Siddique is a graduate of Dow Medical College of the University of Karachi, Pakistan. He completed a neurology residency at the University of Medicine and Dentistry, New Jersey and a fellowship in electrophysiology at Cornell and was a Fogarty International Scholar at the National Institute of Neurologic Diseases and Stroke. He previously held faculty appointments at the University of Southern California and Duke University. His research has been

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continuously funded by the NIH for that past 30 years. Dr. Siddique has received numerous national and international awards, including the first Shelia Essey Award in ALS from the American Academy of Neurology, the Hope through Caring Award from the Les Turner ALS Foundation and the Forbes Norris Award from the International Alliance of ALS-MND Associations.

After the five-hour appointment with Dr. Siddique and his staff (three nurses, an occupational therapist, a speech therapist, a physical therapist, a pulmonary therapist, and others) in Chicago, I was hopeful his research would eventually uncover more about my family’s ALS. Dr. Siddique’s wife, Nailah, who is a research nurse for his team, showed us all the information she had gathered in previous years and recent months about the Bauer ALS cases. A second trip and five-hour visit to Dr. Siddique’s office in Chicago occurred in March of 2013, where a skin punch, muscle biopsy and another lumbar puncture were performed on me to get more sample DNA, etc. The following two paragraphs (in italics) were prepared by Mrs. Siddique (Nailah), on behalf of the Bauer family, and shared with us for this article:

“Our extended family, from Wisconsin to the east and west coasts, has participated for many years in the genetic research going on at Northwestern University in Chicago in the laboratory of Teepu Siddique MD. We have given extensive family history information (a seven generation family tree!) and more than 40 family members have given blood samples. Some of us, like Jim, have also given skin and

muscle samples for study. The point of giving these materials for study is to first identify the genetic change that is causing ALS in our family, and then figure out the way that change acts at the molecular level to produce ALS.

Dr. Siddique recently told us that his lab has been able to identify our causative gene. This was done using a relatively new technique called exome screening, where a few samples from affected relatives who are distantly related have the “working” part of their genetic material (the exome) examined for changes that are unique to them. Once those changes are identified, samples from the whole family are sequenced to see if any of those changes are present in all relatives with ALS—and not present in older family members who are unaffected. Our family worked very well for this because it’s so big, with some of our relatives being so distantly related that they don’t share much genetic material, which narrowed the amount of searching that had to be done. Right now the Siddique lab is working to understand how our gene changes activities within the nervous system to give rise to ALS symptoms and how that fits in with other things already known about ALS. Once that is understood, then it will be possible to figure out a treatment based on that information.”

We are so grateful to Nailah and Dr. Siddique for preparing and sharing the information about Dr. Siddique’s biography as well as their ongoing research studying ALS in the Bauer families.

Because of the large number of cases in the Bauer family and the fact that many are centered in a small rural community where my dad grew up, (Cazenovia, Wisconsin, about 80 miles northwest of Madison), the Marshfield Clinic is also conducting a study. So far, around 300 participants are involved in the study, mainly made up of relatives, their spouses and children. They have done a lot of DNA sequencing using the blood samples of these participants. Dr. Jaime Boero and his staff are working on this study at the Center for Human Genetics in Marshfield, Wisconsin.

In addition, I would like to get involved in a clinical study myself, but so far haven’t located the right familial study or geographic location. I have also found seminars online called “Webinars”, which present very informative topics regarding ALS. Most have been offered by ALS-TDI.

In early September 2012, I suffered a bit of a setback, as I had a ruptured appendix, and by the time I arrived at the emergency room, peritonitis and gangrene had set in. After emergency surgery and a short hospital stay, I recovered well from that. But then, late evening on August 6, 2013, another setback occurred – a mild heart attack, which landed me in St. Clare’s Hospital in Weston, Wisconsin, after a 95-mile trip in an ambulance in the very early morning hours of August 7. After finding four blocked arteries, Dr. Srivastava, a cardiologist, performed a balloon angioplasty and opened the

blocked artery which had caused my heart attack. Within three days, Dr. Chong Chin Lee, heart surgeon at St. Clare’s, performed a CABG (cardio arterial bypass graft) on me. I have since fully recovered and have much more energy again. I had thought my lack of energy during the summer of 2013 was due to ALS. So the “silver lining” of the heart surgery was being able to recover from something (with the help of 36 sessions of cardiac rehab at Marshfield Clinic in Minocqua, Wisconsin) after living for almost two years with a disease (ALS) from which recovery is impossible at this time.

I’m very optimistic about treatment and a cure for ALS. It’s not “if” but “when” it will happen. Hopefully the “when” will be beneficial for my children, my grandchildren, and all others in the future. After living with ALS for almost two and a half years I would recommend the following information for any new members of PALS (People with ALS): Gather as much information about ALS (online, etc.),

realizing the different versions that others may have. Take part in support groups with your primary caregiver.

We have found an excellent support group in Oshkosh, run monthly by Diane Fergot, and we attend with our daughters (in Neenah) as often as possible.

Start to make adaptations in your home to accommodate physical changes and limitations beforehand.

Support and participate in fundraisers, since the study and research of ALS is so underfunded. Our favorite is the “Appleton Walk to Defeat ALS”, with the next one coming up in September, 2014. Our two daughters living in Neenah organized “Team Bauer Power” and this September will be the third year that our team, comprised of family members and friends, will participate and raise funds for ALS research in this Walk.

Educate others about the disease—awareness needs to be raised among the general population.

Talk to your family and friends about help for your caregiver. We are fortunate to have our children and so many friends who are supportive and helpful.

Lastly, be thankful to God for all He has given you and live each day to its fullest!

It is still a good life!

Thank You, Fox Family

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If there’s one family that knows how to throw a party, it’s the Fox Family. Each year, they host a bocce ball tournament in their picture-perfect backyard. After this last one, they’re the talk of the town and arguably the best hosts around. All guests not only enjoyed the delicious food and drinks but also each other’s company.

You won’t want to miss out on this event next summer. The tournament includes twenty-four teams of two. Secure your spots at the 2015 Evening of Hope on March 7th.

Thank you for your kindness and generosity, Fox Family.

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2014 DAYFORE HOPEDay Fore Hope was a success yet again. Golfers came out to the Riverside Golf Course and hit for a cure. A good time was had by all.

Thanks to the Day Fore Hope team for putting it together.

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2014SUMMER FREEZE OUTThe Summer Freeze Out Hockey Tournament had its most successful year yet. And the reason they do it is a story worth sharing.

Many of those who work on the tournament have been members of the 5 Star Hockey Team called “The Warriors.” Jim Eutizzi played with them up until his ALS diagnosis. To show their support, they created this tournament—and now donate 100 percent of its proceeds to our Chapter in honor of Jim. Or as they like to call him, “Jedi.”

Thanks to the SFO team for your continued support.

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A few years ago after a team member was diagnosed with breast cancer, a women’s trap team decided to create an event that would make a difference in the local community. Each year they select a different cause, and this year it was ALS.

Thanks to the Shoot’N For A Reason team for choosing our Chapter. Your time and effort is greatly appreciated.

SHOOT’N FOR A REASON

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2014WAUPACA RIDEThe Waupaca ALS Benefit Ride’s mantra is “When it matters most, together we ride!” And that’s what they did yet again as they rallied together to raise ALS awareness and help Wisconsin ALS patients.

Thank you to the Waupaca ALS Benefit Ride team and all those who joined the ride.

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2014KOEBEL OPENThe 3rd Annual Koebel Open Charity Golf Outing pulled off another well-planned and fun event at the Meadowbrook Country Club in Racine.

Thanks to the entire team and every golfer who came out to support our Chapter.

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Steve Weekes, a former member and instructor of the Madison Scouts Drum and Bugle Corps, founded Rockin’ For A Cure in 2000 shortly after his ALS diagnosis.

Over the years, the event has featured more than 15 musical groups, some of which include The Madison Scouts, The Scouts Alumni Project, The Chicago Royal Airs, The Racine Kilties, Wall of Sound, The Soul Brothers, Finderz Keepers, All That Jazz, Hot Cross Bones, Black Star Drum Line and The O’Bros.

These groups feature Madison Scouts Alumni who volunteer their time to raise ALS awareness throughout Wisconsin, and much-need funding for patient services and research. They truly are Rockin’ For A Cure.

THANK YOU, 2014 Rockin’ For A Cure

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Want a feel-good story amid all the misinformation swirling around the NFL? Saints owner Tom Benson is opening his wallet—widely—to help Steve Gleason achieve a dream. And, yes, the latest draft buzz, including a big trade at Number 1.

Allow me several paragraphs before we get into draft news (or, at least, draft rumors about Johnny Manziel and Jadeveon Clowney) and an interview with high pick Khalil Mack. There’s something else of note, something real…and at this time of year, when so much is smoke and mirrors and disguising real intent in advance of the draft, real sounds good to me right now.

New Orleans Saints owner Tom Benson is donating $5 million to help former Saints special-teamer Steve Gleason, who now is wheelchair-bound with ALS, and his Team Gleason foundation build and operate Team Gleason House for Innovative Living. The gift, Gleason said, will be used as an endowment for annual operating expenses for the home. The house, in New Orleans, will allow 18 ALS patients to live fairly close to self-sufficient lives in rooms where the operation of everything will be controlled by patients’ eyes. The home is scheduled to open in June, and Gleason doesn’t want to stop at just one in New Orleans.

“ Call me crazy,’’ Gleason said Sunday afternoon, “but I envision a facility like this in every NFL city.”

Gleason actually didn’t “say” this. His ALS has advanced to the point where he cannot move any extremities, and he “types” by focusing his eyes on a computer screen, arduously recording words letter by letter on the laptop.

“ This is more than a philanthropic project between Team Gleason and Mr. Benson. This has become a friendship between people—people who are looking creatively at a massive problem and seeking solutions. Let me say that I believe this is an example of how players (ex-players in my case) and NFL organizations can unite to proactively address a problem that has not only affected the NFL, but also tens of thousands of families around the country.”

I asked Benson what motivated him to make this gift. “Steve is part of our Saints family,” Benson said. “He suffers from a terrible disease, but yet his focus and resolve is centered around finding a cure for ALS and helping others who suffer from ALS live full and prosperous lives—and he is doing that right here in his adopted hometown of New Orleans. We could not be more proud of him and [wife] Michel and Team Gleason.”

Gleason has never blamed football—high school, college or pro—for his condition, even though his kamikaze style of play might have contributed to his diagnosis of ALS. Rather, he has focused on doing something about a cure, appealing to the United Nations two years ago to raise the profile to fight the disease, and going about his daily life as much as possible without limits. His goal is for each NFL franchise to lead the way to building an ALS home in each market. “This gift from Mr. and Mrs. Benson,’’ he said, “will help ensure that the Team Gleason House for innovative living will fully meet patient needs. Most of what ALS takes away, technology can give back. The Team Gleason House actually allows ALS patients to control their environment—computers, TVs, lights, doors, elevators—using just their eyes. This innovative concept allows patients to live very independently without bankrupting their families. This will allow them to collaborate with peers and colleagues to continue whatever their purpose in life may be.”

Let’s Get Real … and Then Talk About Draft CharadesBy Peter King

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I’ll be corny for a moment here. There’s something familial about New Orleans that’s different from most cities—maybe every city. Gleason is from Spokane, Wash. He wasn’t a big football hero in New Orleans—though he did make a signature play, blocking a Falcons punt in the first post-Katrina game, which led to a Saints’ upset of Atlanta—but the city loves him like a son. He has made that happen, through the force of his giving nature and because the city feels for him and his family. And because he refuses to be beaten by a disabling malady for which there is no cure. “New Orleans is a unique city,’’ Benson said. “If you love it, it will love you back more than you know.”

Benson has put his wallet behind that love, and he seemed thrilled to do it.

“ Steve has this saying: ‘No white flags,’” said Benson. “If someone is going to be behind finding a cure for ALS, it’s going to be Steve Gleason.”

Here’s the link to it: http://mmqb.si.com/2014/04/28/steve-gleason-tom-benson-saints-nfl-draft

“ Call me crazy,’’ Gleason said Sunday afternoon, “but I envision a facility like this in every NFL city.”

No white flags

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Kevin Swan: Become a FanFounder, A Life Story Foundation

Sense and SensitivityI fully understand the challenges ahead of my team at A Life Story Foundation as we try to raise awareness and create action around the horrible disease that is ALS. This challenge was never clearer than a couple of weeks ago when I was surrounded by, of all people, medical professionals.

After a long day of traveling and a long night (the good kind) of eating and drinking with family, I woke up feeling less than $1 million. I did, as most do right after they wake up, walk towards the bathroom. Unfortunately, right before entering the bathroom I tripped on a wire hanger (I’m sure there is a Mommie Dearest reference in here somewhere) and quickly fell to the tile floor. As I have almost no use of my arms, I used my head to break my fall. The details after this point have been provided by others who were there, as I do not remember much after the hanger.

My girlfriend saw the whole thing unfold in slow motion just a few feet in front of her. She screamed! She quickly picked up my head, as I was unconscious. I cannot imagine how scary all of this was, all happening

so slowly yet so quickly. She called 911. She called my parents who live a few miles away. Everyone was on their way!

The EMTs arrived in no time at all. This is due in large part to having a hospital a few blocks away. My mom arrived right behind them, driving slightly faster than she normally does I’m sure.

“ He has ALS!” It was said early and often to the paramedics and firemen. After all, this is the extremely important part of this puzzle. I imagine they are trained to assess and evaluate every situation as quickly and accurately as possible. So why would they not want this valuable piece of information?

I was talking by the time they arrived, but because of my speech, which has been directly affected by ALS, they thought I may have had a stroke because I was slurring my words. Nope, no stroke, just ALS.

After evaluating my speech, then came the part in the performance where they attempted to pull me up by my arms like I was a buddy of theirs who’d fallen on the basketball court. “No, you can’t do that!” screamed my girlfriend.

It was obvious, there was a complete lack of knowledge. There was one paramedic with a laptop who searched for ALS to find information and procedures on how to treat someone with this disease. He found nothing. I cannot tell you how this infuriates me on every possible level!

Uneducated or misinformed is a common problem with ALS across the board. It was just that much more difficult to swallow coming from a group of medical professionals. My team and so many others in the ALS community are willing to teach anyone and everyone about this disease. So, Manatee County, how do we make this happen?

I will always show grace and patience (or at least really try) to those who simply do not know what ALS is, but for the paramedic who said “so here is a trivia question, what great baseball player died from Lou Gehrig’s disease?” while I was strapped to a stretcher as my family looked on, I look forward to you helping us educate your coworkers in the very near future.

Original link: http://www.huffingtonpost.com/kevin-swan/sense-and-sensitivity_b_5366013.html

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MEMORIALSIola AbneyMaximilian BaneDoris BarbianJames BarbianRaymond BauerBessie BauerRebecca Bell BarbiNanette ElderJ.B. BultmanTim BultmanStephen CushmanWasthi CushmanShirley DemskeJohn DemskeMark DrayShirley GoplinSteve FaustMarilyn FaustPauline GarciaVlademar GarciaPeter GarvinSue MyersMary GarvinElizabeth HamJean BradburyThomas ReillyTeresa HanusIrna BoligCurt JulsonBarbara McKillipsLenard NottestadJanice WoodDelores HesslerRon HesslerRichard HolyokeEllen HolyokeHarry Horner

Arnold LeestmaRobert HurwitzNancy MinkinGladys KastlerBrenda NadolnyLola LaCountPatricia DanielsHelen LamersArthur VandeheyVictoria LeighM. BobuschCarla PowellPeter WolbersenReinhold MatiszikSusan DomowiczJack NormanCynthia NormanLarry PaulTracy CloughJames PetersonNancy BrzezinskiDonna ResekPaula FineKen SalzwedelKathleen SalzwedelVerena SchaeferCheryl AhlerTheodore HegemanGwen KetterhagenJoan KrauseGeraldine MesecMarlene PaprockiMary PrattJanice RichterLinda VosLuAnn WarrenGregg SchleicherMary Alice Schleicher

Christel SchottSusan PerryKipp SonnentagKortney SonnentagJohn WarnerMary PeifferWilliam WeihmeirRebecca CreenJason YagerJacqueline FurrerHenry ZelinskiSherry FoxDennis KramerCarol Zelinski

THE BRIAN TRINASTIC GRANT PROGRAMJanis BrandtJeffery BrunnerJames GodlewskiKay HamiltonKaren JohnsonCindy McBradyPatricia SolfestJulie TeskeReinhold MatiszikErich EngelhardtEsther JensenMargaret MatiszikDana McCabeFiona NicolaisenRobert WalkerJeffery SchmidtJacqulyn Janicki

HONOR TRIBUTESDaniel RourkeSusan Reed

Contributions & MEMORIALS

DONATIONSIndividual Donors

Kathryn BartzSarah BeckerKathryn BuechelAmy EdmondsonKristen Nicole FithianTony HatcherKathleen HeinzelmanJennifer KammienMike LankeMichael MalzewskiJoseph NinnemannLori PaulinCathleen PetersBecky PogacarBarbara SchadeLaura SimsSusan WalshBob Watson

Corporate Donors

21 Movers, IncAIG Grants ProgramAlice WitzAmerican Family InsuranceAnon Charitable TrustAssociated BankAT&TBanding TogetherBig Foot EducatorsBoelter CompaniesDynavox Mayer- JohnsonFederal-Mogul ManitowocFour StarGEGive with Liberty

Global ImpactHal’s Harley- DavidsonHospiraHoughton MifflinHyatt RegencyIllinois Tool WorksInvacare Corporation InvestorsCommunity BankJagemann Plating Co.Kraft Foods FoundationManitowoc Grey Iron Foundry, Inc.Manitowoc Tool & Machining, Inc.Morgan Stanley SmithBarney Global Impact FundingNational Mutual BenefitPinnow PharmacyPitney BowesR.A. PolsonQuadGraphicsSattell Johnson AppelShorewest SunshineSilver Maples FarmTower Plumbing & Heating Inc.United Methodist ChurchUW Hospital and ClinicsVitas HospiceWest Bend MutualWisconsin Aluminum Foundry & Co.

NOTE:These donations were recorded from March 1, 2014 thru July 1, 2014.

Donations to our Walk can be found on our website at www.alsawi.org at the end of December.

Some donations are still being tabulated, so if your contribution is not listed, it will likely be listed in the next issue.

HIGHLIGHTED NAMES:These contributions have been made either in honor of current patients battling ALS or in memory of patients who have passed.

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In MEMORIAMS

MEMORIAMS

In MEMORIAMS

Gerald Bass

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Janis Brandt

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Elizabeth Ham

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Teresa Hanus

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Joe Hays

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Marilyn Iczkowski

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Albert Jedlowski

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Christopher Knutson

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Reinhold Matiszik

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Erika Meyer

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Carol Nelson

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Judy Nimmo

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John Poblocki

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Jean Marie Rottier

Juan Rueda

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Verena Schaefer

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Marilyn Stollfus

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Betty Thorson

In MEMORIAMS

In MEMORIAMS

In MEMORIAMSHonoring the lives and legacies

of those who’ve made an indelible

impact on the ones they’ve left behind.

In MEMORIAMS

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In MEMORIAMS

MEMORIAMS

In MEMORIAMS

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NON-PROFIT ORGU. S. POSTAGE

PAIDMILWAUKEE, WI

PERMIT NO. 3815THE ALS ASSOCIATION Wisconsin Chapter3333 North Mayfair Rd Suite 213, Wauwatosa, WI 53222

CHANGE OF ADDRESS:If you’ve recently moved, give us a call or send us an email and let us know your new address. If you no longer would like to receive this newsletter or other Chapter mailings, please help us save on costs by calling 262.784.5257 or email us at info@alsawi.org and let us know. Thank you.