als access june 2009

1ALS Access Summer 2009

Quarterly Newsletter of The Als Association Florida Chapter JUNE 2009

MaJor aNd MiNor LEagUE BasEBaLLswinging for the Fences to Knock out aLs

The Als Association has joined Major

league Baseball and Mi-nor league Baseball in the new “4®Als Aware-ness” initiative that com-memorates the 70th an-niversary of lou Gehrig’s dramatic farewell speech on July 4th this year in baseball stadiums across the nation.

Fans everywhere will be cheering for people with Als and their families, elevating awareness of the disease to an unparalleled

level and raising funds for research. Through The Als Association’s “Cov-ering All the Bas-es” campaign, you can make a pledge for every hit your favorite team gets on July 4th. Then root for your team because

more hits mean more mon-ey is raised for the fight against Als.

“lou Gehrig was a remarkable man – a man of solid character and quiet strength,” said Dara Alexander, Florida Chapter Presi-dent. “It’s those qualities that define the man behind the disease, and it is his mem-ory that continues to inspire us in our quest to find a cure.”

Three other Als organizations, Als TDI, MDA/Augie’s Quest, and Project A.l.s. are also participating in the campaign marking the 70th anniversary of the speech and encouraging donations.

“We are honored and pleased to

have the opportunity to join these four important organizations in an attempt to make progress in the fight against Als, a disease that is associated with one of the greatest players in baseball history,” said

Major league Baseball Commissioner Bud selig.

Event day highlights include players and celebrities reading the speech. MlB.com will also conduct an online auction to raise funds. The Association’s national network of chapters will also be sponsoring its own special fundraising programs.

“For the first time in history, Als is being recognized and tied to something common amongst all of us, baseball,” said former Boston Red sox pitcher Curt schilling, who named one of his sons Gehrig and along with his wife shonda has raised more than $10 million for The Association. “Unfortunately baseball is why we know about lou Gehrig’s Disease and it’s been too long in coming, but it’s finally here and that’s all that matters. Making July 4th ‘4®Als Awareness’ means that every year we’ll be able to raise money for research and increase awareness.”

On July 4th, the Florida Marlins will take on the Pittsburgh Pirates at home, but the Tampa Bay Rays game will be away in Texas. The Florida Chapter plans to schedule an additional Als night at Tropicana Field to be held after July 4th. stay up to date on new information concerning these games at www.AlsAFl.org.

For more information on getting involved in the “Covering All the Bases” campaign, visit www.alsa.org/coveringallthebases or call 888-257-1717.

3242 Parkside Center CircleTampa, Fl 33619-0907

888-257-1717www.AlsAFl.org

Board of TrusteesJames Moroney

Chairman

david L. smithPast Chairman

dara alexanderPresident

Warren NelsonTreasurer

James Murphy, Jr., Esq.secretary

dr. Larry BarattaJosh garrettHiram green

Cynthia HollowayMartin KoscsoTom McLeanJack ratcliffedonald smith

a. dewayne standifer Leland Talcottsandra Torres

richard gerson, Phd, CPT, CMC Past Member (1951-2008)

2 ALS Association Florida Chapter

dara alexanderPresident

[email protected] ext 101

Joey adkinsDirector of Corporate

Development Walk to Defeat AlsTM


Nancy BailyOperations Director


Judie BenwickCare Coordinator

[email protected]

ext 112

Jessica BianchiCare Coordinator southeast [email protected]

ext 122

Christine BrightCare Coordinator southwest [email protected]

ext 130

Lisa BublinecAdministrative Assistant


donna Valin ghiotoRegional Philanthropy

[email protected]

ext 121

Kamden KuhnPublic Relations Coordinator


Patti PalmerEvent Associate


rhonda rittenhouseCare Coordinator

[email protected]

ext 109

robin seeBookkeeper


Heran sisayCare Coordinator

[email protected]

ext 103

Katie WaltersTeam Development

Coordinator Walk to Defeat AlsTM


PiECE By PiECE CaMPaigN UPdaTE

since January, 150 mannequins bearing the names of those affected

by Als have been making stops around the state and gaining quite a bit of attention. This Piece by Piece Tribute Display is just one facet of The Als Association’s Piece by Piece Campaign that launched on January 5. Commercials and billboards are also appearing in an effort to spread the message that “lou Gehrig’s Disease is stealing our loved ones piece by piece.”

so far, the Piece by Piece Tribute Display has made appearances in downtown Tampa and st. Petersburg, at the Capitol building in Tallahassee, at Raymond James stadium, and at several Walks to Defeat Als™. The campaign stayed in Tampa throughout Janu-ary and February and in Tallahas-see throughout March and April. If you haven’t seen it yet, the campaign will soon come to a market near you!

Behind the scenes Everywhere those mannequins go,

one faithful fighter is by their side. Als patient steve Franks hitches a trailer to his truck and tows the mannequins from

place to place. He was diagnosed in 2003, and while he is no longer able to work, steve won’t let Als steal his determination.

After learning of the Piece by Piece campaign last No-vember, steve vol-unteered to spear-head the task of transporting the mannequins. He bought and sold several trailers

on Craig’s list until he found just the right one – a 7’ x 14’ dual axle trailer that has since been wrapped with Piece by Piece artwork and advertisements. steve has devoted his entire year to the awareness campaign, hauling the man-nequins around the state. When he ar-rives at a location, volunteers will meet him to unload the mannequins from the trailer and arrange them into rows and columns. The routine creates a power-ful visual.

888-257-1717 813-637-9000

www.aLsaFL.org

sTaFF dirECTory

Top: Steve Franks poses with his truck and the Piece by Piece trailer Bottom: 150 mannequins took over downtown Tampa on January 15

JUNE & JULy . . . . . . . . . . . Orlando

aUgUsT . . . . . . . . . . . . . . .Miami

sEPTEMBEr . . . West Palm Beach & oCToBEr

NoVEMBEr . . . . . . . . . . Fort Myers & dECEMBEr

Continued on next page


Mary Jane Bailey, 1928 larry Ballowe, 1950

Frank Baltar, 1914-1998Norma Barlow, 1936

Joseph H. Bigl, 1928-2000Giacomo Borselli, 1956-1995

Nancy Bound, 1929-2008Milton s. Bradley, 1943-2005Richard C. Bradley, 1961-2008Angela C. Breheny, 1930-2003

Bill Campbell, 1935-1995Agnes Carrano, 1936-2008

Michael A. Clein, 1941-2008Betty Collet, 1918-1997Ouida Cook, 1930-2008

Barbara "Bobbie" Cummings, 1942-2008

Patricia G. Dorion, 1936-2006William J. Duey, 1941-2007

Christine Duran, 1952-1995larry P. Edge, 1946-2009Col. larry Epstein, 1949

stephen E. Fahrer, 1973-2008Ella Ferguson, 1952-2008

Beatrice Flanagan, 1905-1989Gregory Ballou Ford, 1958Jacquie Fort, 1949-2009Bob Fowler, 1939-2009

steve Franks, 1958Al Gonopolsky, 1945-2007

Michael Govostes, 1950lee A. Horner, 1939-2006

lawrence P. Hughes, 1926-1982Kurt Hutchings, 1959-2009Gustavo Irizarry, 1954-2008

Keith James, 1971- Keith Jones, 1970-2009

Phyllis F. Jordan, 1930-1990

Joel R. Kesner, 1946-2007Edith W. Kravitz, 1936-2007Ann s. leach, 1940-1997

Enrique lopez-Cuenca, M.D., 1944-2003

lawrence A. Markowitz, sr., 1930-2005

Donald R. Martin, 1948-2008Kenneth E. Meadows,

1938-2008Mark Mendelsohn, 1949-2009Darryl Montgomery, 1941-1999

Daniel Andrew Morrill, 1972-2007

Toby lee O'Brien, 1966-2006Alice Ondo, 1931-2002

luis A. Ortega, 1957-2008 sydney Andrew Palladino,

1914-1977

Richard Pascarella, 1959 Ken Patterson, 1968James Alan Pearlman,

1984-2004David s. Price, 1953-2007

Gloria (Go-Go) Proper, 1924-1990

Joyce E. Puckorius, 1929-2009Richard Pascarella, 1959

Paul D. Righter III, 1936-2006Charles H. Robarts, 1934-2005

Gene Thomas Robarts, 1944Debra Anne Roe, 1951-2008

laura l. scarpate, 1949Robert (Bob) seidl, 1945-2004

Roger shelton, 1943-2008Paul J. shields, 1926-2004

Josephine louise Wright sicard, 1922-2004

Robert simmons, 1950-2008Dean W. simpson, 1923-1979

Ann smith, 1949-2004Hampton smith, 1956Ronnie M. spurgeon,

1943-2004Rob squires, 1968-2009Theresa stephens, 1946

To All Those living with Als, Fort Myers, Fl

Gerald W. Turianski, 1942-2006

Collis Weaver, 1942-2008Buster Whitmer, 1951-2006

Constance B. Wilks, 1930-2007

William (Bill) Wimpee, 1954-2008

The following names are represented in the Piece by Piece display.

For more information about honoring your loved one through the Piece by Piece Tribute display contact Kamden Kuhn at 888-257-1717. you may also sponsor a mannequin online at www.stealingPieces.org.

The Als Association Florida Chapter has proclaimed the Franks the family that best exemplifies the spirit of “Als Across America.” The “Als Across America” national campaign recognizes courageous individuals with Als who are role models to people with lou Gehrig’s Disease. These special individuals reflect the spirit of the organization as they make a positive difference in their community by expanding awareness of Als and embodying the spirit of living life to the fullest.

steve Franks truly has the heart of a servant and represents the theme of “Als Across America.” He may not be taking the message of Als across America, but he is physically taking the message of Als across the state of Florida.

Visit www.StealingPieces.org for more information about the Piece by Piece Campaign or for a listing of upcoming dates and locations when the display may be near you.

Mannequins aren’t

the only ones sporting Piece by

Piece t-shirts.

You can get one too!

T-shirts are now

on sale at the

Piece by Piece

e-store . Just visit

www.StealingPieces.org then click get

involved and look for the e-store link at the

top of the page .

The impressive display stood in Ybor City (left) and on another occasion in front of the Hillsborough County Courthouse (right).


rEFLECTioNs oF a PaLs U.s. diplomat Thomas ohlson

i had a wonderful childhood growing up in Hollywood, Florida, where I

was always active and outdoors. After graduating from college, I returned home certain of only one thing - I did not want a desk job in some office. After working as a sailing instructor, a zoologist, and as a naturalist driving airboats in the Everglades, I joined the U.s. Army. I derived great satisfaction in serving my country, and decided to seek a career in government. After receiving an honorable discharge from the army, I pursued a Master’s degree and was accepted into the Foreign service.

As a diplomat with the U.s. Department of state, I had the good fortune to serve in such places as the Bahamas, Russia, Afghanistan, and the U.s. Mission to the United Nations in New York City. In my work as a diplomat, I often served as a spokesperson for the U.s. Embassy, explaining important issues to foreign audiences. At the United Nations, I was often called upon to make persuasive arguments in front of hundreds of dignitaries.

It was while I was in New York in 2005, that I noticed a weakness in my right hand. After countless tests and procedures for what I initially thought was a simple case of carpal tunnel syndrome, I was given a diagnosis of Als. I was in the best shape of my life, had a beautiful wife, three wonderful kids, and my career was really taking off - I simply could not believe I had such a bleak future. I spent the next year in denial, however in 2007, I began to have difficulty walking up hills, and my speech would become slurred after speaking for any length, especially in cold weather.

After consulting with my neurologist and family, I asked for an assignment back home in Florida. This would afford

me the opportunity to live out my final days in a familiar setting, surrounded by friends and family. I have fantastic colleagues and supervisors at U.s. southern Command in Miami, all sympathetic and supportive of my condition, but I can no longer even make it into my office.

Although I would certainly prefer to be a participant rather than a spectator, I have come to terms with my immobility. However, my inability to communicate

with friends and loved ones has been difficult to accept. I am the same person I always was inside - I think the same, argue the same, and the voice in my head speaks in the same quick and loud baritone I had before my illness. I want to jump up and debate ideas, submit opinions, and make jokes but I no longer have the ability. I would desperately like to read stories to my youngest daughter, but I struggle just to answer her typical questions about the world - thank God for the unconditional love of 5-year olds.

Throughout this entire journey, my loving family has supported and comforted me. My wife Cristina, and three wonderful children logan, Fallon, and Freya are the reason I wake up and view each day as a gift. A benefit to returning home is living near my sister

Dawn and my dear friends steve and shannon, who help me with a ride or a good laugh. steve even attends support group meetings and doctor’s appointments when my wife cannot make them.

It has also been my good fortune to have met Jessica Bianchi and the folks from The Als Association. As a patient advocate, Jessica has no peers. she introduced me to the Paralyzed

Veterans of America, who advocate on behalf of veterans with Als, so that we may receive our full VA benefits. Jessica also calls my doctors to ensure they are following up on my needs and emails me with updates continuously. Although relatively small, The Als Association makes us feel very well looked after and their personal touch is much more comforting than larger organizations - they really seem like family. They all inspire me and give me every reason to avoid depression and self-pity.

I may never again be able to sleep without a mask strapped to my face or walk along the beach. These are now minor inconveniences. The fact I may never see my son grow into the mature, responsible man I know he will be, nor walk my daughters down the aisle, or that I may never have the chance to grow old with my wife hurts me. However, this horrible affliction has taught me one invaluable lesson - stop always looking to the future for happiness and appreciate what you have right now. My memories are now my treasure and every day is another gift to be enjoyed and then added to that treasure. You can never be too rich or too healthy!

Tom Ohlson enjoys life in Hollywood, Florida with his beautiful wife and three children.


With seven chances to make a difference, supporters of The Als Association Florida Chapter didn’t waste any time. This spring, more than 5,000 people across the state of Florida stepped up to the starting line at the Walk to Defeat Als™ and put two feet

forward for a cause they care about. Whether in Jacksonville, Miami, Palm Beaches, Tampa, Orlando, sarasota, or Fort Myers, walkers came out in droves hoping their steps would make a difference for over 1,200 Als patients around the state.

The mood was festive. Walk teams wore colorful t-shirts and moved to the beat of the music as they made their 2-mile treks. Many who walked had a loved one who is still fighting the deadly disease. Others walked in memory of a loved one who has lost the battle. Many people, without any

personal connection, still walked out of a simple concern for those who are suffering with lou Gehrig’s disease.

For many teams, Walk day was the celebration at the end of a longer race – the culmination of many months of fundraising and battling it out to be the

top team. The lead teams in each market raised between $10,000 and $20,000 each.

When every family team and corporation added their efforts together, the 2009 Walk to De-feat Als™ events raised about $850,000! That total represents an all-time record for The Als As-

sociation Florida Chap-ter and another banner year for faithful walk-ers across the state.

Thank you walkers, patients, families, volunteers, businesses and community leaders for helping us accomplish such a successful Walk season. Your efforts were indispensable, and each walk became

the evidence of your dedication to this cause. Preparations have already begun for the 2010 Walks where we hope to top this year’s performance and take another giant leap in our quest for a

cure.

Congratulations!16 Teams Raise $10,000+ or more In alphabetical order

Ballowe’s Bunch, Blazing saddles, Bob’s Buddies, Cathy Fulton’s Always loyal support Team, Elaine’s Entourage, Greg’s Gang, Hampton, Hicks Oil Company, Inc., Higgy’s Heroes, Kevin’s Warriors, Nina’s High Rollers, Penguin Team, PNUT’s PAls, Team Grapevine, Team larry Fein, Team steve, The Walking Eagles

The Florida Chapter is accepting Walk donations through late summer so it’s not too late for your team to join the $10,000+ list!

THE 2009 WaLK To dEFEaT aLs™ Booming attendance. Banner year.

Over a thousand walkers take off in Jacksonville

Team Steve gathers for a photo op

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Photo by M

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Damian Ward, a young member of “Walking for Daniel,” along the route

Team I Love Lucy walks with homemade shirts & signs

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Over 800 walk, roll, and run in Palm Beaches, near Roger Dean StadiumPho

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Chapter President, Dara Alexander, presents Troy Dunn, owner of Dunn & Co., with a special award for creating the Piece by Piece CampaignPho

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Firefighters in Tampa walk in full uniform

Hard-working Jacksonville volunteers take a brief photo break

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Signing advocacy letters, an important part of pre-walk activities

2009

Central Florida News 13 photographer

covers the Orlando WalkStaff member, Nancy Baily, high fives a Sarasota Walker

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Nina’s High Rollers celebrate their fundraising success

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Tripp the dog keeps watch as staff member Katie Walters

and volunteers tally donations after the Orlando Walk

Scrapbook

Energetic walkers at the Sarasota Walk to Defeat ALS™

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Warming up with Jazzercize in

South Florida

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Plant High School drum line leads the pack in TampaTeam members walk in Palm Beach

in honor of Beau MacVanePho

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Find more walk photos and add your own on our Facebook page. search “The aLs association Florida Chapter.”


Monika Adams, Palm Beach GardensGraciela Alvarez, Gotha

Christopher Ambler, Palm BeachWalter Anderson, Cocoa Beach

Judith Aveni, Spring HillThomas Becker, CharlotteMary Bentley, MiddleburgScott Bezanson, NokomisStarr Bishop, JacksonvilleChuck Blackton, OrlandoViola Bogardus, Sebring

William Bozeman, BrooksvilleCarolyn Braithwaite, Jacksonville

Melvene Brehme, JacksonvilleJoseph Cappiello, Inverness

Anthony Cardinale, Fort MyersYolanda Cito, Wellington

Robinson Colon, Cape CoralOuida Cook, Lake Worth

Nancy Cook, MiltonDominick Cristo, Boca Raton

Celestine Dantzler, JacksonvilleDianne Decarlo, Spring Hill

Richard DeWitte, JacksonvilleAna Diaz, Lakeland

Larry Dupree, CallahanLarry Edge, Lithia

Robert Edwards, BradentonSamantha Evans, Bradenton

Rose Felts, EsteroDavid Ferguson, JacksonvilleKenny Ferrell, Pinellas Park

Thomas Fife, LakelandJacquie Fort, Vero BeachRobert Fowler, Clermont

Fred Francois, NaplesTed Garn, Port Orange

Jacquelin Graham, MacclennyRichard Greenspan, Wilton Manors

Donald Hernick, MelbourneJune Hughes, Marianna

Kurt Hutchings, Fort MyersGustavo Irizarry, Deltona

Michael “Keith” Jones, Saint AugustineLoretta Karlander, Clearwater

Firooz Khosrowzadeh, Jacksonville Beach

Loretta Kuntz, Palm Beach GardensKirby Lester, Tampa

David Lewis, CrestviewRobert Lewis, Wesley Chapel

Janice Longfellow, AlvaRobert Martini, Cocoa

Thomas McQuay, LoxahatcheeJohn Miller, Fort Lauderdale

Edna Mixon, UmatillaJohn Moffatt, Winter ParkDenis Moleski, Palm CoastAllen Moore, Fort Myers

Jean Morey, Boynton BeachDennis Murphy, Orlando

Howard Naumann, Vero BeachLeonard Njus, Sebring

George Parrish, OrlandoTony Perry, Sebastian

Joyce Puckorius, SebringJacquelyn Quinn, Port Saint Lucie

Rosa Quispe, MiramarStanley Ratka, Jacksonville

Odell Rogers, Saint Petersburg

Fanny Sanchez, GainesvilleChristina Seegert, Seminole

Mike Shively, SarasotaRobert Simmons, Naples

Diane Stead, HudsonRob Squires, Vero Beach

Wallace Sittsworth, EsteroDon Sommerfield, Cape CoralFrank Stefurak, Palm Harbor

Rasa Szepelak, PlantationWilliam Thoresen, New Smyrna

Sol “Al” Ward, Delray BeachBilly Ward, Saint Augustine

Lavinia Wasson, DeltonaMarilyn Watson, Orange ParkRuth Whited, Ormond Beach

Keith Wilbourn, ApopkaBetty Williamson, Pensacola

William Wimpee, JacksonvilleSusan Yoakum, Cocoa

Winifred Young, TrinityRuth Zeeberg, Deerfield Beach

Listed above are those who passed since the last publication, based on information provided to our offices. Please notify us of any corrections or omissions.

In MemoriamWe extend our sympathy and continued support to the family and friends who have recently lost their loved ones

to ALS. We remember their courage in living and keep their spirits alive in our memories and hearts.

rEsEarCH BrEaKTHroUgH

a consortium of scientists orga-

nized and funded by The Als Association discovered a new gene, Als6 (Fused in sar-coma), responsible for about 5 percent of the cases of inherited Als. Researchers have called the discovery one of the most significant break-throughs in the recent his-tory of Als research. It will provide important clues to the causes of inherited Als, which ac-counts for 10 percent of all cases, and sporadic Als, which occurs in individu-als with no family history of the disease and accounts for the other 90 percent of cases diagnosed.

“This is a momentous discovery in furthering our understanding of Als,” said lucie Bruijn, Ph.D., senior

vice president of research and development for The Als Association. “A new gene provides a new piece of the puzzle we can use to shed light on why Als develops, and where to focus our efforts on creating new treatments and finding a cure.”

The project was sup-ported by a group of lead-ing Als researchers from around the world, formed as part of The Associa-

tion’s Gene Identification Project. Their success reflects an unprecedented ef-fort to accelerate the search for genetic mutations linked to all forms of Als.

This is the second Als-causing gene to be discovered in the past 12 months. sOD1, discovered in 1993, accounts for 20 percent of inherited cases of the disease. Mutations in the TARDP gene account for another four

to five percent. The only well-defined causes of Als are genetic. In both inherited and sporadic Als, the disease symptoms and pathology are the same.

The possibility that Als may be caused by several factors is the rationale for The Association’s policy of funding multiple genetic projects around the world and encouraging these leading geneticists to work together and share information to help locate disease-linked genes for faster, more accurate scientific results. By funding research on a global level, The Association helps put together “genetic pieces” of the Als puzzle.

“Through our support of research such as this study, The Als Association is committed to finding the causes of Als, and using that knowledge to develop a cure as rapidly as possible,” Dr. Bruijn said. “We will build on the discovery of this new gene to carry that effort forward.”

Advice for 2009

I am writing on the eve of the upcoming year. While

2009 is filled with promise, I think it is wise to indulge the

temptation to live in the past and reflect upon 2008 and all

of its lessons. Certainly, I was not a fan of 2008 but since it

didn’t kill me there must have been much to learn.

Here are my top ten take-aways from the year that was...

- Ultimately you are responsible for your own

health care

- Love and spend time with your family

- Friends are the window to who you are

- Don’t patronize the handicapped; respect them

- Look for the best in others

- Pray and be thankful

- If someone wants to help, let them

- Limit worry and anxiety where possible

- Sleep

- Give time and money

- Sing, dance, or whistle Keith Jones 12/31/08


NEEd MEdiCaL EqUiPMENT? FiNd iT HErE!

The Florida Chapter maintains several equipment “loan closets” around

the state. Generous companies like Wheelchairs Plus, Baycare Homecare, Ability Medical, AMI, and Gulf Coast Rehab donate their space to house our equipment and also make compli-

mentary pick-ups and deliveries to accommodate the needs of pAls.

Because of these loan closets, Als patients can receive necessary equip-ment like wheelchairs, walkers, lifting devices, and communication

aids that would otherwise be very

expensive.For more information

about obtaining or donating medical equipment please call 888-257-1717.

Equipment donorsWe extend our thanks to the

following donors for their generous gifts of equipment that have been given since our last newsletter was published. Because of your kindness, we can provide help to patients currently suffering with this illness.

Communication Devices:Carolyn BraithwaiteBobbi IzlarAlicia Jonesloretta KuntzJanice MoreyBarry sweger

Durable Medical Equipment:Al Adams - walker; cane; companion

chair Alice Armstrong - power wheelchairOscar Blasingame - manual wheel-

chair; walker

Mary Ann Bozeman - manual wheelchair

Katherine Brown - 2 power wheel-chairs; ramps

Bushrod Burns - power wheelchairsusan Dolter - power scooterMarcella Dorman - wheelchair; walker

wheelchair liftlarry Epstein - power wheelchairValerie Finley - power wheelchairHarold Greenberg - grab bars; power

wheelchair; manual wheelchair; walker

Richard levasseur - power wheelchairJanice Morey - hospital bed; walkerKen Patterson - lift chairArlene Rhodes - patient liftlorraine Romine - power wheelchair;

3 walkers; trapeze and lift chairMary solt - manual wheelchairKaren Wenger - power wheelchairVanessa Williams - lift chair

Advice for 2009

I am writing on the eve of the upcoming year. While

2009 is filled with promise, I think it is wise to indulge the

temptation to live in the past and reflect upon 2008 and all

of its lessons. Certainly, I was not a fan of 2008 but since it

didn’t kill me there must have been much to learn.

Here are my top ten take-aways from the year that was...

- Ultimately you are responsible for your own

health care

- Love and spend time with your family

- Friends are the window to who you are

- Don’t patronize the handicapped; respect them

- Look for the best in others

- Pray and be thankful

- If someone wants to help, let them

- Limit worry and anxiety where possible

- Sleep

- Give time and money

- Sing, dance, or whistle Keith Jones 12/31/08

On New Year’s Eve, Als patient Keith Jones blogged this list of lessons learned in 2008. less than a month after Keith posted this, the young businessman passed away, but his memory lives on. Keith’s family is continuing a venture that he began called “Project 2-4-20.” Keith’s goal was two-fold: 1) to live strong and well until 2/4/20 and 2) to raise two million dollars for the fight against Als by 2/4/20. While Als robbed him of his first goal, Keith’s family continues to pursue fundraising for “Project 2-4-20,” having raised over $44,000 so far. To contribute to this special fundraising initiative visit The Als Association Florida Chapter’s Community of Hope at www.AlsAFl.org and search for Keith Jones.


aLs: To TUBE or NoT To TUBE By Melody Chavez, Clinical Dietitian, Tampa, Florida

The word “feeding tube” may be intimidating for people with Als.

Most people have heard negative stories regarding a feeding tube through debates like the Terri schiavo case heard in the news. Others may see a feeding tube as “giving in” to this disease. However, learning what choices you have regarding this issue will help patients to be proactive in their care.

A significant predictive factor for survival in Als is maintaining good nutritional status. Despite best efforts to maintain adequate nutrition and hydration, malnutrition can occur. The physical ability to prepare and eat food due to dysphagia, poor pulmonary status, breathing difficulty, chronic infections, and psychological distress all contribute to malnutrition.

Gastrostomy tubes, better known as g-tubes, are the most commonly placed feeding tubes in people with Als. A gastrostomy feeding tube insertion is the placement of a tube through the skin and the stomach wall directly into the stomach. Having a foreign body present in the stomach might sound unpleasant. However, this is a minor outpatient surgical procedure which might not even require an overnight stay in the hospital.

A feeding tube should be introduced and discussed early after diagnosis to allow patients time to consider it before dysphagia reaches the serious stage. some patients do not want to hear

about this in the early stages. However, it is important to become educated and consider this as an option in your care. Discussion with your physician about the timing and placement of a g-tube is essential.

Early placement of a g-tube before it is “needed” to improve impaired nutritional status may provide Als patients with the greatest benefit and least risk1. The American Academy of Neurology’s current guidelines suggests a g-tube placement be made before the forced vital capacity of a patient falls to 50%1. Patients who wait until their respiratory capacity falls below 50% of their predicted volume are at greater risk for developing respiratory complications.

some people become very anxious during meal time or when taking their medications due to coughing or frightening choking episodes. The decision to have a feeding tube placed before eating becomes a chore can help patients continue eating as an enjoyable process. This will help patients eat only as much as is comfortable and use the g-tube for supplemental feeding to maintain good nutrition. Knowing that this means of nutrition will not alter the ability to continue to eat can be helpful in calming fears of tube feeding and surgery. The tube can also be an excellent avenue to administer medication if pills become too hard to swallow.

Feeding tube placement is a very personal decision. Nutrition intervention

is essential for a proactive, aggressive treatment plan for Als. However the patient’s wishes as well as the best clinical evidence should drive your decision, incorporating the patient and caregiver’s definition of “quality of life.”

Symptoms that warrant consider-ation for a G-tube placement:

1. Dysphagia with coughing

2. Choking during ingestion of food, fluid, or medication

3. sialorrhea (drooling or excessive salivation)

4. Fatigue with eating

5. It takes too long to eat a meal, and it’s not fun any more

6. significant anxiety with eating that creates too much of a burden for the patient (sometimes the caretak-er’s anxiety becomes the patient’s anxiety as well)

7. Pills are too hard to swallow…literally! However, until such time that a PEG might be placed, many pills can be crushed and added to puddings, applesauce, etc.

8. Respiratory status has been declin-ing and the Als team is concerned that delay in PEG placement could make the procedure too risky in the future

9. Unhealthy, unintentional weight loss that alters strength and is concerning to the patient enough to intervene.

Thank You Donors! The Als Association Florida Chapter treasures each and every financial gift we receive. In an effort to “go green”

and save printing costs, we have provided a listing on our website of persons who have donated $250 or more to our organization since November 2008. Please visit web.alsa.org/donors for a full listing of special gifts. Thank you for your generous support of the fight against Als!

References1. Procaccini, N.J., Nemergut, E.C. Percutaneous Endoscopic Gastrostomy in the Patient with Amyotrophic Lateral Sclerosis. Practical Gastroenerology, Series #60,

2008. p. 24-34.

11ALS Access Spring 2009

Submitted by ALS Patient, Leon Peek

Those are the commands that I use to open and close my new voice

recognition software. It goes by the name of Dragon Naturally speaking and is distributed by Nuance.

Coping with Als we find ourselves always adjusting to do the things others take for granted. With the loss of my typing fingers I found myself frustrated in wasted time and energy making corrections.

This new software is very advanced and is easy to setup and train. Dragon simply asks you to read into a microphone (included) while it records the way you pronounce words and how you construct sentences. It is akin to having your own secretary, and so far, one that doesn’t talk back. It brings a new level of quality to your

letters because it captures your very own personalized writing style.

I would advise this for anyone who would like to give those fingers a break while being able to communicate better in the days ahead.

Below I have provided you with a customer service number. Tell them about Als. They have special pricing for disabilities. With Dragon you simply say “smiley face” and one is created for you. :-)

Customer service will answer ques-tions to help customers find the prod-uct best suited for their needs and of-fer pricing for individual purchases. You can reach Nuance at 1-800-654-1187.

advocates from the Florida Chapter and across the country joined together

on Capitol Hill as The Als Association hosted the National Als Advocacy Day and Public Policy Conference. The three day conference, which took place May 10-12 in Washington, DC, provided the Als community with an opportunity to

come together, share their experiences and hopes and urge Congress to join the fight against this horrific disease. Through advocacy, we are developing the roadmap that will lead us to a treatment and cure.

The impact that Advocacy Day has had is evident. Advocates have done

more than just raise aware-ness of the disease in the halls of Congress. They have fought for and passed significant legislation that not only benefits the lives of pAls and families today, but also those whose fight has not yet begun.

For example, since Advo-cacy Day last year, we have helped to:• EnacttheALSRegistryAct

(Public law 110-373). The registry may become the single largest Als research program ever created!

• Implementhistoricnewregulationsat the Veterans Administration that make Als a service-connected disease and provide more than $500 million in health and disability benefits to veterans and their survivors.

• Secure$5milliontocontinuetheAls Research Program at the Department of Defense, the only Als-specific program at DOD, which is designed to find new treatments for the disease.

In fact, our advocacy accomplish-ments in 2008 alone may result in the federal government spending as much as $1 billion on Als over the next ten years! Together, we are making a dif-ference!

if you have any questions or would like to become an aLs advocate, please contact Nancy Baily at 888-257-1717 ext 105 or [email protected].

2009 NaTioNaL aLs adVoCaCy day aNd PUBLiC PoLiCy CoNFErENCE

“WaKE UP”, “go To sLEEP”, “WaKE UP”.

Advocates gather at a candlelight vigil in Washington D.C.

Durable Medical Equipment

coordinator Patti Allman will soon be moving with her family to

Dayton , Ohio. We are grateful for her three years

of service on the staff of the Florida Chapter and wish

her and her family the best!

we’ll miss you, patti!

NONPROFIT ORGUs POsTAGE

PAIDTAMPA Fl

Permit No 2910

3242 Parkside Center CircleTampa, Fl 33619-0907

FLorida CHaPTEr UPCoMiNg EVENTs

JUNE 20 THE BarNEy CooMEs aLs

goLF CHaLLENgE orlando, Florida

JULy 4 MLB “4®aLs aWarENEss”

all Major League Baseball games

aUgUsT 8 ForT MyErs MiraCLE

LoU gEHrig NigHT Hammond stadium

Other Lou Gehrig Night dates to be announced

NoVEMBEr 7 ToUr dE ViE: a BiKE ToUr To dEFEaT LoU gEHrig’s disEasE

Walsingham Park, Largo, Florida

sUPPorT groUP LoCaTioNs

ALS support groups provide hope to those living with ALS while providing valuable networking opportunities for patients and their families. You will find practical advice on day-to-day living with ALS and a safe place to express your concerns.

Boynton Beach

Daytona-Ormond Beach

Fort Myers

Gainesville

Jacksonville

leesburg

Manasota

Melbourne

Naples

Ocala

Orlando

Pensacola

Tallahassee

Tampa

Treasure Coast/stuart

Weston

Vero Beach

Visit www.aLsaFL.org or call us at 888-257-1717 for support

group dates and directions.

FiNd THE FLorida CHaPTEr

oN THE WEB!

Become our “fan”

The Als Association Florida Chapter

Add us as a “friend”

www.myspace.com/ alsflorida

Become our “subscriber”

www.youtube.com/user/alsafl

PiECE By PiECE TriBUTE

disPLays visit

www.stealingPieces.org for dates

als access june 2009

Documents

als awareness

als organizations

als tdi

additional als night

als access summer

baseball history

als associations covering

als awareness initiative