2012 spring msconnection

TOLL FREE NUMBER 1 800 344 4867 | 1

Hampton Roads CHaptER

INSI

DE

THIS

ISSU

E:

®

Hampton Roads Chapter

M O V I N G T O W A R D A W O R L D F R E E O F M S

MS Awareness Week:March 12-18, 2012

Spring 2012

Making a Difference8

Picturing DisabilityPage 22

ResearchPage 14

It really is a SMALL WORLD. WE are ALL CONNECTED.

2.1 MILLION people live with MS in this WORLD. 2,773 people live with MS in HAMPTON ROADS.

Every HOUR of every DAY someone in the U.s. is DIAGNOSED with MS.

We ARE: Your Friend Your spouse Your neighbor

Your Co-worker Your dry Cleaner someone you LOVE and CARE ABOUT

WhaT WiLL yOU dO TO ENgagE, CONNECT, iNspiRE, aNd RaisE AWARENESS?

Check out page 6 for more information about MS Awareness Week!

Walk MSPage 4

2 | JOiN ThE MOVEMENT: nationalMssociety.org

COMMUNITY CALENDARprograms in this section are not organized by the national multiple sclerosis society.

Multiple Sclerosis Educational Group

the multiple sclerosis Educational Group is your opportunity to exchange information and coping strategies and get the latest on ms research and treatment in a comfortable and confidential environment. this program is designed for multiple sclerosis patients, caregivers, and families.

4th tuesday of the month at 5:30 pmneurosciences Conference Room Riverside medical office Building 12200 Warwick Blvd. newport news, Va 23601

the group is offered by Riverside Center for neurosciences and meets on an ongoing basis.

For more information call (757) 875-7880.

Caring For You, Caring For Me: Education and Support Program march 14, 21, 28 & april 4, 11 2:30-4:45pm the program addresses the needs of family and professional caregivers by bringing them together in a relaxed setting to discuss common issues, share ideas, and gain a better understanding of each other’s perspective on what it means to be a caregiver. Register early as space is limited. Inquire about respite services. $35.00 fee per participant. sponsored by and held at Windsormeade:3900 Windsor Hall dr., Williamsburg, Va 23188 For more information or to register, contactChristine Jensen at 757-220-4751 [email protected]

757-490-96271-800-FIGHTMS

publication of the national multiple sclerosis society Hampton Roads Chapter760 Lynnhaven parkway, suite 201Virginia Beach, Va 23452

Chapter Chairman Jim dyche

Chapter president sharon L. Grossman

newsletter Editor Robyn m. Hirsch

Information provided by the society is based upon professional advice, published, experience and expert opinion. Information provided in response to questions does not constitute therapeutic recommendations or prescriptions. the national multiple sclerosis society recommends that all questions and information be discussed with a personal physician.

the society does not endorse products, services or manufacturers. such names appear here solely because they are considered valuable information. the society assumes no liability for the use of contents or any product or service mentioned.

the mission of the national multiple sclerosis society is to end the devastating effects of multiple sclerosis.

If you or someone you know has MS: studies show that early and ongoing treatment with an Fda-approved therapy can reduce future disease activity and improve quality of life for many people with multiple sclerosis. talk to your health care professional or contact the national ms society at www.nationalmssociety.org or 1-800-344-4867 to learn about ways to help manage multiple sclerosis and about current research that may one day reveal a cure.

© 2012 national multiple sclerosis society, Hampton Roads Chapter


UPDATES

2012 EMPLOYMENT TELECONFERENCE SERIESmultiple sclerosis can have a significant impact on every aspect of life, including the world of work. don’t miss out on the last two calls in our series. Call us at 757-490-9627 or visit our website, www.fightMS.com, to register. the call in number and materials will be given upon registration.

tHURsdaY, maRCH 8 FRom 7-8 pm HomE-BasEd EmpLoYmEnt: WHat EmpLoYERs Want Learn from employers about what they look for when hiring people to work from home. The registration deadline for this call is March 1, 2012.

tHURsdaY, maRCH 22 FRom 7-8 pmdon’t do It aLonE: EmpLoYmEnt REsoURCEs Learn about agencies and resources available to help you gain and maintain employment. The registration deadline for this call is March 15, 2012.

Ever want to see what Bike ms is all about? 2012 is a great year to check it out! We’re changing the ride up a bit to provide more route options. Join us June 2 and 3 for the best ride around!

this year, both the one-day ride and the two-day ride will leave from Cape Charles. one-day participants may choose from 35-, 75- or 100- mile route options. We’ll have shuttles to transport one-day cyclists from the finish at Camp silver Beach to Cape Charles. With all the

rides starting at the same location, we’re also staggering the start.

We invite all levels of cyclists to come and enjoy the Virginia’s Eastern shore and raise funds, make a difference, and create a collective momentum to change the lives of everyone living with ms. all rookies and returning riders must raise a minimum of $300 and most raise more than $800 (fundraising is simple with our online tools to help you reach your goal). Cyclists may choose to ride for one day or two. Lodging is available at Camp silver Beach in cabins and camping or at one of the three hotels we provide shuttling to.

Visit fightMS.com to register today!

NEW ONE-DAY ROUTE OPTION FOR BIkE MS

the teleconferences were recorded and can be accessed on our website, fightMS.com, along withthe handouts.

• a 21st Century approach to Job searching • managing Challenging Resumes • Get Informed: Legal protections in the Workplace • Reinvent Yourself

UNABLE TO PARTICIPATE ON THE CALLS HELD IN JANUARY AND FEBRUARY?



WALk MS IS JUST AROUND THE CORNER!Walk ms is our rallying point, a time and a place for us to stand together and to be together — to help raise critical funds that support cutting edge research, drive change through advocacy, facilitate professional education and provide programs and services to help people with ms move their livesforward.

Be there. Because every movement you make and every dollar you raise supports the mission to create a world free of ms.

Mariners’ Museum Walk in Newport NewsWhen: saturday, april 14 Registration and check-in begin at 8 a.m.Walk start time: 9 a.m.

We’ll begin at the museum entrance winding our way through a tree-lined, accessible trail and along Lake maury. You’ll return to a tasty treat and spring-filled activities!

Mt. Trashmore Walk in Virginia Beach When: sunday, april 15Registration and check-in begin at 1 p.m.Walk start time: 2 p.m.

take a relaxing stroll around Lake trashmore and be welcomed back with the aroma of tasty Chinese food! thanks to Forbidden City, you’ll enjoy a Chinese Feast at the end of this walk!

Waterside Marketplace Walk MS in NorfolkWhen: thursday, July 12Registration and Check-in begin at 5 p.m.Walk ms starts at 5:45 p.m.

the Waterside Walk ms is a different kind of walk; we’re walking after work! Join us for a brisk or leisurely walk along the Elizabeth River through town point park and past the nauticus. We’ll finish at Waterside marketplace for fun-filled happy hour with live music and more!


EVENTS

REGIstER todaY at WWW.FIGHTMS.COM oR CaLL 757-490-9627.


INVOLVEMENT

BEnEFIttInG tHE Hampton Roads CHaptER

the Hampton Roads Chapter would like to thank all who attended the Vienna Boys Choir: Christmas in Vienna event at the sandler Center for the performing arts. We’re thrilled to announce the performance sold out!

the evening was magical! Beginning with a Ruth’s Chris steakhouse pre-show Reception and finishing with the brilliant talent of the choir. the event raised $35,000 for research and local programs for those living with ms.

VIENNA BOYS CHOIR: CHRISTMAS IN VIENNAIN PARTNERSHIP WITH THE SANDLER CENTER FOR THE PERFORMING ARTS

Chapter Staff: (L to R) Robyn Hirsch, Shannon Rice, Michelle Derr, Karla McCarraher, Sharon Grossman

tHE FEstIVE EVEnInG Was madE possIBLE BY oUR sponsoRs:

ms Center of tidewater and neurology specialists of tidewater

Clark nexsen architecture and Engineering

Beach Ford

Ruth’s Chris steak House Williams mullen

sandler Center for the performing arts

We know that so many of you in Hampton Roads want to do something about ms now… but don’t know what to do! We have the opportunity for you--become a movement ambassador!

the movement ambassador program is a way for you to help the Hampton Roads Chapter spread the word about programs, research, and events in the area we live. We often get requests to make presentations or attend health fairs but are unable to accommodate due to our limited staff and booked schedules. therefore, we will provide the movement ambassadors with tools and resources to make the best presentations possible. You even get to pick your “comfort zone”! If you’re a Bike ms or Walk ms participant and would like to engage people to become involved in our events, that will be your area of expertise. If research is your interest, we’ll make sure you get all the information necessary to give a great presentation.

If you are interested or would like more information, please contact shannon Rice at [email protected] or Robyn Hirsch [email protected].

BECOME A MOVEMENT AMBASSADOR.INSPIRE. EDUCATE.MOVE.

spread awareness and education by telling your story. Your personal experience and example can give hope to someone living with ms, give motivation to an event participant, give a voice to our media outreach efforts, and give a face to our advocacy efforts.


• Flag Down MS In an effort to BE BoLd the Hampton Roads

Chapter would like for you to join us as we put together a visual display to spread awareness about ms. We want to show everyone how many members of our community live with this unpredictable disease.What does 2,773 look like? TOO MANY.

We will gather at thalia Lynn Baptist Church (next to princess anne High school in Virginia Beach) to decorate this prominent spot with one orange flag for everyone who lives with ms in the Hampton Roads Chapter territory. please come on out and publicly show your support for the ms movement.

When: monday, march 12 from 5-6:30 pmLocation: thalia Lynn Baptist Church 4392 Virginia Beach Boulevard Virginia Beach, Va 23462

For more information, contact Robyn Hirsch or shannon Rice at the Chapter at 757-490-9627.don’t forget to wear your orange!

• Fun Ways to Spread the Word and Raise Awareness • Invite your friends and family to become a fan of the

national ms society, Hampton Roads Chapter on Facebook or twitter

• Conduct a Facebook campaign asking your friends to dedicate their status or profile picture to the cause

• Gather a group of friends outside of a prominent place and splash the area with orange pom-poms and signs announcing ms awareness Week

• or think of your own creative ms awareness activity (don’t forget to share your great ideas with us; post your ideas on our facebook page.)

Multiple SclerosisAwareness WeekMarch 12-18, 2012



• Digital Downloads (MSConnection.org) • Use one of our ms badges or Facebook Covers on your social media page • Include one of our E-mail signature Images in all your emails leading up to and during ms

awareness Week • do you have a web site? download and post an ms awareness Week web banner on your

site and then forward it to everyone you know who has a website. ask them to post the banner during ms awareness Week. (Remember to have the URL click back to www.nationalMSsociety.org)

• Use one of our ms awareness Week wallpapers • share the “ms Impacts Us all“ Youtube video with everyone you know • donate your status updates on Facebook, myspace, and twitter to ms awareness Week!

• Make It Your Mission to Splash Hampton Roads with ORANGE during MS Awareness Week!!• Wear our signature orange throughout the week• Conduct a “WEAR ORANGE” day at your work or

school• Bring your friends or co-workers a sweet, orange

treat–cupcakes, oranges • Use orange fonts on your computer (don’t forget to

download and use an ms awareness Week Email signature)

• Get Involved in MS Activism Every person touched by ms has a unique and powerful story. Whether you are a person living

with multiple sclerosis, a family member, a friend, or a volunteer for the cause, sharing your experience can help create positive change.

• take action on a federal issue (http://capwiz.com/nmss/issues/) • Visit the ms activist blog (www.msactivist.blogspot.com)and leave a comment • Contact your elected official and share your story • ask your friends, family, and colleagues to get involved (http://capwiz.com/nmss/taf/) • Write a letter to the editor of your local newspaper. tell your story and ask for change on one

issue.


RaIsInG aWaREnEss

RaIsInG oUR VoICEs WItH LEGIsLatoRs

We must do MOREyou, Me, Everyone we know, it’s going to take ALL OF US!

RaIsInG FUnds to LIFt pEopLE Up

RaIsInG FUnds to dRIVE ms REasEaRCH

Together, WE CAN CREATE a WORLD FREE OF MS


TAx DEDUCTIONS BEYOND MEDICINE

• Be part of bike MS, walk MS or challenge walk MS! In conjunction with ms awareness Week, team Week

for the Bike ms and Walk ms is march 12-18. We will have prizes for the teams that have the highest percentage of participant recruitment. to help you recruit, registration during team Week for Bike ms is $25 plus accommodations (the regular registration price is $45!) and of course, Walk ms is FREE!

If you are interested in starting a team, please visit www.fightMS.com. the first person to register the team becomes the team Captain. It only takes four or more people to make a team, so recruit friends to join you from your workplace, school, religious organization, or other group.

WHAT WILL YOU DO TO ENGAGE, CONNECT, INSPIRE, AND RAISE AWARENESS?

many of the expenses associated with managing ms might be tax deductible, beyond medicines. (Keep in mind that only unreimbursed

medical expenses that exceed 7.5% of your adjusted gross income are deductible.) Here are additional possibilities:

• EqUIpmEnt and ExtRas, such as service dogs (and dog food!) and transportation to doctor appointments via car service or taxi if you can no longer drive.

• HomE modIFICatIons that don’t increase a home’s value. “Get a doctor’s prescription for ramps, wider doorways, grab bars, even a swimming pool, as well as a letter from a real estate agent stating that

these changes don’t make your home more valuable,” suggests anne davis, program director of Legal services for the society’s new York City and southern new York Chapter.

For people receiving ssI or disability benefits, impairment-related work expenses may be deducted from their earnings, if their income might otherwise jeopardize their government benefits.

two IRs publications—907, tax Highlights for persons with disabilities (www.irs.gov/pub/irs-pdf/p907.pdf) and 502, medical and dental Expenses (www.irs.gov/pub/irs-pdf/p502.pdf)—may be helpful. Consult an accountant to make sure your particular situation is in line with current IRs regulations.

NEWS


NEWS

MEDICARE NEWS

In 2012, the “donut hole,” or gap in prescription drug coverage, still exists, but the affordable Care act requires insurers to give medicare part d participants a 50% discount on most brand-name drugs, including the ms disease-modifiers, while they are in the coverage gap. drugs prescribed “off label” for ms symptoms are still excluded from coverage and exempt from the discount.

For general information visit www.medicare.gov. Call an ms navigator® at 757-490-9627 for free health-insurance counseling.

tHE “ExtRa HELp” pRoGRam

people who receive ssI (supplemental security Income) benefits, or who get help from the state medicaid program to pay part B premiums (medicare savings plan), automatically qualify for “Extra Help,” which means no donut hole for prescription drugs as well as lower coinsurance and copayment costs. people with low incomes also qualify. apply directly through the social security administration at www.socialsecurity.gov/i1020.

FLU SHOT, OR NOT?Because there is a much higher risk of an ms relapse due to flu than to the flu vaccine, the society generally recommends that people with ms get the shot. “don’t wait for flu season to catch up with you. discuss getting the flu shot with your doctor to protect yourself this year,” says Rosalind Kalb, phd, vice president of the society’s professional Resource Center.

the injectable flu vaccine—which is an “inactivated” vaccine—has been studied extensively in people with ms and is considered quite safe. It may be taken by people on an interferon medication, glatiramer acetate, or mitoxantrone. It is not yet clear if the vaccine is as effective for those talking natalizumab or fingolimod.

It’s best to delay vaccination for four to six weeks after the onset of any serious exacerbations. people with ms should avoid Flumist, a live-virus flu vaccine (sometimes called LaIV for “live attenuated influenza vaccine”) delivered via nasal spray. For more information, go to www.nationalMSsociety.org/vaccinations.


ADVOCACY

Eight ms activists from Hampton Roads gathered with advocacy volunteers from across Virginia on January 29-30 for the 2012 Virginia Legislative action day! Led by the four Virginia chapters of the national ms society (Blue Ridge, Central Virginia, Hampton Roads, and national Capital), the Virginia Citizen action network (Va Can), which is a collaboration of people who want to do something about ms now, represented the more than 10,000 people living with ms throughout the state. activists arrived in Richmond for an intensive day of issues training on sunday. and then on monday, they headed to the Capitol to share their powerful stories with legislators and to urge them to support legislation relevant to people living with ms and their families. specific pieces of legislation included:• permitting the department of Conservation

and Recreation to allow the use of wheelchairs or other power-driven mobility devices on the statewide system of trains in accordance with the federal americans with disabilities act of 1990 (HB 522)

• Renaming the Virginia Housing partnership Revolving Fund to the Virginia housing trust Fund. the bill provides that 20 percent of the moneys deposited in the Fund in any fiscal year shall be used by the department for grants for the construction of new or rehabilitation of existing housing units, rental assistance to individuals and families experiencing homelessness, and other appropriate assistance to facilitate the achievement of housing stability (HG 790)

• directing the secretary of Health and Human Resources to convene a work group composed of various stakeholders to develop a plan for addressing housing and transportation needs of Virginians with disabilities ( HB1229)

• developing a Virginia Health Benefit Exchange • Funding a Health Care safety net, since it is

predicted that even after implementation of federal health reform, an estimated 289,000 Virginians with income under 200% of federal poverty guidelines will remain uninsured (297#3h, #4h, #9s, #11s, #12s)

• In addition, ms activists advocated for crucial budget restorations to medicaid (long-term care services, respite care, adult day health services), as well as restoration of funding to the Centers for Independent Living, the department of Rehabilitative services (personal care assistance), and the Foundation for Rehabilitation Equipment and Endowment (FREE).

If you would like to learn more about how you can be more involved in advocacy or become an ms activist, visit the “take action” section of our website (www.fightMS.com) or email [email protected].

2012 VIRGINIA LEGISLATIVE ACTION DAY

(L to R) Jeff Kerr, Robyn Hirsch, Debbie Smith, Rona Brown, Shannon Rice, Kathy Young, Deanna Deschenes, Rick Balak

TOLL FREE NUMBER 1 800 344 4867 | 11

INTRODUCING THE “DO-IT-YOURSELF FUNDRAISING” WEB TOOLS

do–It-Yourself (dIY) Fundraising is an opportunity for people living in Hampton Roads with a deep commitment to the ms cause to raise awareness and critical funds for the ms movement in new and creative ways. We even have online tools for you to send emails and design a web page! Check out these five easy steps to dIY Fundraising success!

1. Come up with a fundraising idea that is meaningful to you. think of what you and your potential supporters enjoy doing and what might attract a broad base of support. When deciding on the scale of your event, you’ll also want to consider how much time you have to devote to the campaign.

2. Let us know your plans by registering via our online form! this is required and the online form is available on our website.

3. take advantage of our resources. download materials from our website to help guide your fundraising process.

4. publicize your event! Use our online tools--the participant Center! You can send emails or mail letters to your friends, family members and colleagues. Reach out to everyone you know. post signs on community bulletin boards and messages on Facebook and twitter. If you’re hosting the event at a business, ask how they can help promote your event.

5. Have fun! Enjoy the day of your event and be sure to let everyone know how much their support means for people living with ms. Be sure to take lots of pictures and email them to [email protected].

FUNDRAISING

DIY THEMES:

Spring - Yard sales (don’t forget about eBay and craigslist)

Summer - sports (Golf, dodge ball, Kickball, softball tournaments; olympic Games Viewing party)

no mattER WHat tHE EVEnt, YoUR sUppoRt and ContRIBUtIon maKE a dIFFEREnCE!


RESEARCH

LIVING WITH MS

the good news about planning a pregnancy when you have ms is that there’s no evidence that ms has any effect on fertility; pregnancy usually reduces exacerbations (although flares do tend to increase postpartum); and good outcomes are the norm.

nevertheless, making the decision to get pregnant can be complicated, primarily because of the physical challenges of ms, says Barbara Green, md, director of the West County ms Center, st. Louis. “I also suggest women think about and discuss with their partners the emotional and financial challenges of raising a child, which could affect work and managing the disease.”

mEds, pREGnanCY and ms

none of the disease-modifying drugs (dmds) are approved for use during pregnancy, and most should not be taken for a few months beforehand. “the risk time is when you’re attempting to conceive,” noted dr. Green. plan a discussion with your neurologist about when to stop dmds—and when, after delivery, to begin them again.

“Until recently, most studies were neutral about whether breastfeeding was protective in preventing relapses,” says dr. Green. “But a new study quotes a beneficial effect on relapse. people with non-aggressive disease may be able to wait to resume dmds, which can’t be taken while nursing.”

Include any symptom-management medications in the discussion with your doctor. From bladder problems to fatigue, pregnancy can make ms symptoms worse, yet many meds are not safe for pregnant women. “We advise people on non-pharmaceutical approaches: getting enough sleep, adjusting work schedules and exercising,” says dr. Green.

“symptoms during pregnancy are probably not ms—tiredness doesn’t mean your symptoms are coming back,” says Eileen davis, apn, who has worked with people with ms for 12 years in new Jersey and new York. Keep exercising, she recommends, “so you aren’t carrying unnecessary weight post-pregnancy, which can affect symptoms such as falling.”

Julie Hammond, diagnosed with ms in 2002, with son travis. Courtesy of Greater new England Chapter.

PREPARING FOR PREGNANCY

TOLL FREE NUMBER 1 800 344 4867 | 13

LIVING WITH MS

Knowledge Is Power is a six-week, free, at-home educational program for people who are newly diagnosed. Mail or email formats. To register, call 1-800-344-4867, or visit www.nationalMSsociety.org/knowledge.

JOIN THE MOVEMENT®

ConnECt tHE tEam

Connect your obstetrician and neurologist to coordinate your care. Visit www.nationalMSsociety.org/pregnancy for “pregnancy, delivery and the post-partum period” to share with health-care professionals. If anesthesia is part of your birth plan, arrange a meeting with the anesthesia team. all forms of anesthesia are considered safe for women with ms.

don’t wait to plan for what happens after delivery. tap family and friends about helping with housework, food and, of course, watching the baby!

RESOURCES ON MS AND PREGNANCY

Check out the society’s collection of videos, books, booklets and Web pages that you can download, or call us for free print copies.

www.nationalMSsociety.org/pregnancy

“ms and starting a Family”—Momentum, Winter 2010-2011 www.nationalMSsociety.org/Momentum (click “Back Issues”).

Kara’s story – part I www.youtube.com/watch?v=F1-heWHC7jIthe national ms society follows Kara from her first trimester…

Kara’s story – part II www.youtube.com/watch?v=npgN99NeD1k&feature=channel…all the way through to the birth of her baby boy.

the ms daily minute www.nationalMSsociety.org/dailyminute

sixty-second videos packed with information on

• Beginning ms therapy after pregnancy

• Relapses during pregnancy

• Breastfeeding with ms

• support during and after the pregnancy


52 MS GENES IDENTIFIED

In the largest ms genetics study ever, researchers have documented 29 new genetic variants associated with ms, and confirmed 23 others previously implicated in the disease.

most of the genes were related to immune function, and more than a third have already been linked to autoimmune diseases. a large number were related to t-cell function; t cells, a type of white blood cell, play a major role in the immune system’s attack against the nervous system in ms. also, two genes linked to vitamin d were found: research increasingly suggests that low vitamin d levels are a risk factor for developing ms. (the society is funding a new clinical trial of vitamin d supplementation.)

the study, a collaboration between the International ms Genetics Consortium and the Wellcome trust Case Control Consortium 2, was published in the august 11, 2011, issue of Nature, and involved nearly 10,000 people with ms and more than 17,000 who do not have the disease. While the results of genetics studies haven’t so far resulted in the ability to do individual genetic counseling, these and further findings should help uncover what causes ms and improve treatments. the society is funding a second large study to confirm and expand these results.

NEW MS THERAPY MOVES FORWARD the first phase III study of alemtuzumab (proposed brand name Lemtrada) for relapsing-remitting ms found that the drug met one of two primary endpoints. Researchers found that people treated with the drug had 55% fewer relapses over two years compared to those taking the interferon Rebif. However, results of the trial’s other goal, to delay disability, were not statistically better than Rebif. the study, called CaRE-ms I, involved 581 people with relapsing-remitting ms. another trial, called CaRE-ms II, is still underway.

alemtuzumab is a monoclonal antibody that attacks the cells in the immune system that contribute to myelin damage. It is presently approved by the Fda to treat B-cell chronic lymphocytic leukemia. sanofi and Genzyme, the drug’s sponsor, plan to seek approval of this intravenous drug for ms in the U.s. in early 2012. In June 2010, the Fda designated alemtuzumab a “Fast track product,” which should expedite its future review after results of the phase III trials are submitted.

RESEARCH

TOLL FREE NUMBER 1 800 344 4867 | 15

RESEARCH

BONE HEALTH MAY BEGIN EARLYpeople with ms have long been known to be at risk for bone loss, but a study published in the July 12, 2011, issue of Neurology suggests that it can occur very early, even before ms has been diagnosed.

according to the study, low bone mass is more widespread among people newly diagnosed with ms, or those with clinically isolated syndrome (or CIs, a single episode of ms-like symptoms), than among people without ms. study researchers measured bone density in 99 people newly diagnosed with ms or CIs, compared to 159 people without ms. more than half of the people with ms or CIs had low bone mass, compared to 37% of controls.

previously, scientists had speculated that people with ms are at greater risk of low bone density and broken bones due to factors such as lack of exercise stemming from mobility issues, medications or low levels of vitamin d (which plays a significant role in building bone). the researchers suggested that even early in ms, people should pay attention to good bone health by getting adequate vitamin d and calcium, as well as by performing weight-bearing activities. For more ideas on promoting bone health, go to www.nationalMSsociety.org and search for “You Can Build Healthier Bones.”

MS RESEARCH TAkES CENTER STAGE

In october, About.com blogger dr. Julie stachowiak and producer/director Kate milliken—both of whom live with ms—reported live from the world’s largest ms conference on the society’s blog.

at the fifth joint meeting of ECtRIms and aCtRIms (the European and americas Committees for treatment and Research in ms), over 5,000 of the world’s leading scientists and clinicians gathered in amsterdam. Results from four phase III studies on ms therapies were presented, along with the latest research on ms risk factors, treatments and diagnosis.

Join the conversation at blog.nationalMSsociety.org, and connect with people with ms, the people who care about them and ms experts.

16 | JOIN THE MOVEMENT: nationalMSsociety.org

The Commonwealth of Virginia has launched a new statewide Advance Health Care Directive Registry. Virginia is unique among states that offer this kind of service, since there is no cost to Virginia taxpayers or registry users. This is a public-private partnership between the Virginia Department of Health, UNIVAL, Inc. and Microsoft Corp, to provide an important service to Virginians. The secure electronic registry tool allows all Virginia residents to store their important documents (Advanced Health Care Directive, Health Care Power of Attorney, Declaration of Anatomical Gift, etc.) so that medical providers, emergency responders, family members, and anyone else they grant access will honor their wishes. It protects a person's legal rights and ensures that medical wishes are honored if that person becomes incapacitated and unable to manage their own care.

Registration is simple. Residents enter basic information, create an account and select a

personal identification number (PIN) and password. Each Virginian who signs up receives an identification card containing their personal registry information so heath care professionals can access it if necessary.

The database of Advance Directives is held in a confidential and secure site, protected by the most up-to-date web and database security standards. All of the information submitted will be used only by authorized individuals and will be kept completely confidential.

For more information, visit the Advance Health Care Directive Registry website at www.virginiaregistry.org or if you are a Virginia resident without computer access call 1-800-224-0791.

Don’t have Advance Health Care Directive Documents? Don’t worry. The Registry website provides downloadable, free blank forms, brochures and booklets from the Virginia State Bar.

World MS day: May 30, 2012JoIN THE GloBal MoVEMENT. ENd MS!

On May 30th the world unites once more in the MS movement to highlight the international effects of multiple sclerosis. Organized by the Multiple Sclerosis International Federation (MSIF), with the help of MS Societies, the focus of World MS Day is on the needs of people with multiple sclerosis, the economic impact of MS, and the urgent need for more research to eradicate the disease. We encourage all those affected

by MS worldwide to think globally and act locally, coming together to take positive action in the MS movement to end the disease.

Visit www.worldmsday.org for more information on World MS Day, as well as digital downloads to help spread the word.

adVaNcE HEalTH carE dIrEcTIVE rEGISTry

aNNouNcEMENTS

TOLL FREE NUMBER 1 800 344 4867 | 17

VOLUNTEER

the Hampton Roads Chapter is hosting two upcoming events, Walk ms & Bike ms, and we need all the volunteers we can get to fill a variety of positions. Volunteers are essential for the success of our events. Come join us for a chance to meet new people, make a difference in the lives of those living with ms, and have a great time.

WaLK ms – 3 LoCatIons• saturday, april 14, 2012 at the mariners’

museum, newport news• sunday, april 15, 2012 at mt. trashmore,

Virginia Beach• thursday, July 12 at Waterside marketplace in

norfolkVolunteers Needed: Registration, Rest stops, set-Up & Breakdown, Food service, mission table, Route marking and sign sweep

BIKE ms: VIRGInIa’s oCEan to BaY RIdEJune 2 & 3, 2012Virginia’s Eastern shoreVolunteers Needed: Registration, truck drivers, saG drivers, Rest stops, set-up & Clean up, Luggage Beasts, Finish Line support, Food service, Camp support, massage therapists, Route markers and sign sweeps.

MARk YOUR CALENDARS!!

If you are interested in volunteering with the Hampton Roads Chapter for Walk ms, Bike ms

or any of our other events, please email Karla mcCarraher, director of special Events, at [email protected] or visit our

website at www.fightMS.com

INTERESTED?

SUPPORT AND ADVERTISING OPPORTUNITIESthis space available for you or your business or company!!

Help the Hampton Roads Chapter share important information about research, programs, services and events by supporting the MSConnection and/or the MS Update newsletters.

You may “sponsor” the entire issue, or take out a full, half or quarter page ad. promote your business or honor or memorialize someone special…the opportunities are endless!

Contact Robyn m. Hirsch at 757-490-9627 or [email protected] to learn more.


Every year the Hampton Roads Chapter honors volunteers that have truly made a difference in the lives of those affected by ms and in their community. anyone can make their mark, but it takes a special person to be as dedicated as Rick powell. therefore, we were honored to present him with the “make Your mark” award for 2011 at our annual meeting. When sharon Grossman became Chapter president in 1980, she heard that the minnesota Chapter held a fundraising bike ride. she figured, why not try it here! Rick, who had recently been diagnosed, was an avid cyclist and together they launched the Hampton Roads Chapter’s first bike ride! Back then, fewer than 100 cyclists participated in Bike ms! Fast forward to today. the event now raises over a half a million dollars and approximately 600 cyclists and 200 volunteers participate annually! Rick’s initial work connecting the chapter to the tidewater

Bicycling association and the local bike shops helped to make Bike ms the region’s premier cycling event. and where is Rick every year during Bike ms? He is either riding his bike or volunteering.

While Rick’s passion was cycling, he has become more involved with the chapter over the years. Recently, he became a movement ambassador and has attended speaking engagements on behalf of the chapter. His knowledge of the

disease, how it can progress, and the research that is in the pipeline makes him the perfect ambassador.

Rick volunteers at all of the Chapter’s events. at our Walks and stair Climb, you’ll find him at the mission table talking to people about the advances in research and living with ms. during ms awareness Week, he’s out at Flag down ms helping us build the display of 2,800 flags- one for every person living with ms in Hampton Roads.

If Hampton Roads had to put a face on ms, it would be Rick’s. Even though he has a progressive form of ms, he continues to give back and stay positive. It is difficult to put into words how grateful the chapter truly is.

INTERESTED IN BIkE MS, BECOMING A MOVEMENT AMBASSADOR, OR VOLUNTEERING?

CHECk OUT OUR WEBSITE, WWW.FIGHTMS.COM

MAkING A DIFFERENCE – RICk POWELL

Rick powell with last year’s winner teresa Crowson

VOLUNTEER SPOTLIGHT

TOLL FREE NUMBER 1 800 344 4867 | 19

DONATIONS

• Call our toll free number 1-877-672-8864 (with your title in hand) or submit the electronic donation form found online at www.AUTOS4MS.org.

• Fax a clear copy of your title, both front and back, to 1-877-672-2774.

• a towing company will contact you to schedule vehicle pick up.

• a receipt will be mailed to you after the completed sale transaction of the vehicle.

HELP DRIVE AWAY MS: DONATE YOUR VEHICLE the donation of your car, truck, motorcycle ortrailer, in any condition, can be used to help fund critical research for ms. to begin the process or learn more, visit us at www.AUTO4MS.org or call us at 1-877-672-8864.

KEY poIntsUnlike other auto donor programs, the national ms society receives 100% of the proceeds from the sale of your vehicle. proceeds fund programs and services for people living with ms and research that will get us closer to a cure. Your vehicle donation is tax deductible to the extent allowable by law.

Sabra DeWittdavid & mary Elliottmarie melsonthomas & Frances RayfieldRawlings & Gail scott

Jocelyn Gulrudadelia Harrisonneal & Katherine Jenkinssabina, Byron & Chris mcpherson

Diana koehlyKenneth & patricia pleasant

Bob Little, SrVirginia Beach assessors office

Carson William Mason, IIEmilee mason

Aunt Mikeymichael & sharon Grossman

Johnson TurnerLorie Baker

Joseph WalatJacqueline Rager

MEMORIAL GIFTS & TRIBUTES HONOR LOVED ONESthe Hampton Roads Chapter of the national multiple sclerosis society would like to sincerely thank the generous contributors who made memorial and tribute gifts between september 2011 and december 16, 2011. the memory of a loved one, or the excitement of a special occasion, lives on through these thoughtful gifts.

MEMORIAL GIFTS TRIBUTE GIFTS

if you would like to make a memorial or tribute gift, please contact the chapter at 757-490-9627 or visit fightMS.com

In Honor of Jill NelsonCharles & susan FutchJames & patricia Kramer

In Honor of Holly Beth Patrickmichael patrick

TOLL FREE NUMBER 1 800 344 4867 | 19

IGNITING THE PROCESS


2012 LINkS TELECONFERENCE SERIES9 oppoRtUnItIEs to LEaRn moRE aBoUt ms FRom tHE ComFoRt oF YoUR HomE

We are pleased to present a series of teleconferences for clients with ms and their families entitled “LInKs.” Whether you just received a diagnosis of ms or have been living with it for a long time--the goal of this series is to “link” you with information and tips on how to maintain your quality of life in the years ahead.

this nine week series will run tuesday nights (7-8 pm) from april 3 through may 29, 2012. Each call will be conducted using a toll-free number, so you can call from the comfort of your home. participate in several calls or just the one that interests you.

4/3: HEaLtH InsURanCE: YoUR RIGHts and REsponsIBILItIEspeople with ms and their families know that health insurance is one of their most important life lines. But confusion about health insurance, from employer-based health plans to medicaid and other government-based coverage, is common. this call will provide an overview of the major sources of health coverage for people with ms, with an emphasis on your rights and responsibilities as covered individuals.

4/10: mEntaL GYmnastICs: tHE poWER oF tHE mInd to HURt & HEaLWe’ve all been held ransom by those nagging thoughts now and then that keep us up at night and just won’t fade. Join this call as we explore how what we think affects both our emotional and physiological states, ultimately leading to better and worse states of health or illness. discussion will also touch on how emotional intelligence—the ability to identify, assess, tolerate, express, and effectively manage difficult emotions— results in a higher quality of life and an improved state of well-being.

4/17: ImpRoVInG YoUR LIFEstYLE tHRoUGH FInanCIaL pLannInGmaintaining financial security is a high priority for people living with an unpredictable disease like ms. this teleconference will discuss financial planning strategies by beginning with the end goal in mind. the discussion will include assessing your income versus expenses, reallocating resources, benefits that are available through the government and employers, as well as resources for further information.

4/24: ms & dEpREssIonmultiple sclerosis is a complex disease that can affect the mind, as well as the body. With an estimated 50% people with ms experiencing a major depressive episode at some point, it is evident

EDUCATION

TOLL FREE NUMBER 1 800 344 4867 | 21

EDUCATION

that ms can cause significant emotional changes. Join us on this call as we address factors that can impact your emotions and outline depression vs. normal grieving, symptoms of clinical depression, and treatment options.

5/1: at HomE WItH ms: adaptInG YoUR EnVIRonmEntms symptoms can make everyday activities more challenging—but an endless array of mobility aids, adaptive strategies, and environmental modifications are available to help you stay mobile, productive, and independent at home. Listen to this call as we discuss how to improve your house or apartment to make it more accessible, as well as ways to organize to conserve energy and simplify work.

5/8: paIn In mspain syndromes are common in ms. In one study, 55% of people with ms had “clinically significant pain” at some time and almost half (48%) were troubled by chronic pain. this call will help you tounderstand the nature of pain in ms, discuss pharmacologic and non-pharmacologic pain management strategies, and explore self-management models of pain management.

5/15: WaLKInG WItH ms--FIGHtInG tHE ConsEqUEnCEs oF ms on moBILItYproblems with gait (difficulty in walking) are among the most common mobility limitations in ms. studies suggest that half the people with relapsing-remitting ms will need some assistance with walking within 15 years of their diagnosis. Learn about the factors that lead to walking limitations in ms and the consequences of decreased mobility. We will also provide an overview of how walking can be assessed, to track its evolution over time, and to determine the effects of treatments. Lastly, we will explain the various therapies and devices that can help improve or maintain walking performance throughout the course of the disease.

5/22: CaRE optIons–WHEn HELp Is nEEdEdas your symptoms change, it is important to know what options are available to you and your family to help maintain your independence while also ensuring your needs are met. this teleconference will focus on the differences and benefits of in-home care, assisted living, skilled nursing facilities, respite care, and adult day programs and how to determine which option is best for you and your family.

5/29: ms REsEaRCH UpdatEResearch in ms is progressing at a remarkable rate, with more potential therapies in the pipeline than at any other time in history. the national ms society is a driving force of ms research, supporting and stimulating world-class research into ways to prevent, better treat and cure this unpredictable disease. Join us and learn how far we’ve come, where we’re going, and what the society and others are doing to move toward a world free of ms.

FoR moRE InFoRmatIon oR to REGIstER, VIsIt WWW.FIGHTMS.COM oR CaLL 757-490-9627.


PICTURING DISABILITYBy dONNa FELLMaN

twenty years ago, in august 1991, when my children were six, four, and 11 months old, I was diagnosed with ms. my youngest child, Kaija, was taking her first steps while I was losing the ability to walk. I used a cane, but soon needed crutches, and by the time Kaija was two, I was using a wheelchair most of the time.

Last year, in a college photography class, Kaija was given the assignment to do a photographic essay. she chose “disability” as the subject and framed images that showed her development as a little girl with portrayals showing the progression of my disability. there is a photo of her little shoes with my cane, representing her learning to walk alongside my difficulty walking. Included is a sequence of shoes to illustrate her growing up, my mobility aids, our legs together, her self-portrait in a wheelchair, and other images depicting her memories and perceptions of disability.

We talked about what it was like for her and her brothers growing up. Looking at her little red shoes, I said to Kaija that I had never held her hand and walked with her.

Her reply: “I always had your lap.”

Donna Fellman lives in rural Maine.

LIVING WITH MS

Copyright Kaija Fellman

TOLL FREE NUMBER 1 800 344 4867 | 23

HAMPTON ROADS CHAPTER SELF HELP GROUP LISTINGFor more information on any of the following groups contact (757) 490-9627 unless otherwise noted.

HELP & SUPPORT

Virginia Beach Morning Group 2nd tuesday of the month @ 10 am(February, may, august, and november group meets at 11:30am at Frankie’s place for Ribs: 5200 Fairfield shopping Center, Va. Bch., Va)Kempsville public Library832 Kempsville Road, Virginia Beach, Va For more information contact peteat (757) 497-6594 or [email protected].

Elizabeth City Group 3rd monday of the month @ 2:30 pmFor group location and/or more information contact melvin at (252) 335-9158.

Chesapeake Group 3rd tuesday of the month @ 7 pmLifestyle Fitness Center at Chesapeake General Hospital 800 n. Battlefield Blvd., Chesapeake, VaFor more information contact margie at (757) 482-3247.

Suffolk Group 3rd Wednesday of the month @ 6:30 pmmagnolia United methodist Church1764 Wilroy Road, suffolk, VaFor more information contact Willie ann at (757) 539-0139.

Southside Group 4th Wednesday of the month @ 3 pm(Group location for may tBa)meyera E. oberndorf Central Library (Libris Room)4100 Virginia Beach Blvd., Va. Bch., Va

Gloucester Group1st Wednesday of the month @ 10:30 amRiverside Wellness and Fitness Center7516 Hospital drive, Gloucester, Va

African American Inspirational Group 1st thursday of the month @ 11 amHampton public Library936 Big Bethel Road, Hampton, VaFor more information contact VeeGee at (757) 696-2540 or [email protected].

Williamsburg Group 2nd & 4th Wednesday of the month @ 5:30 pm James City County/ Williamsburg Community Center5301 Longhill Road, Williamsburg, Va For more information contact Joann at (757) 220- 0902.

Peninsula Evening Group 2nd thursday of the month @ 5:30 pmsentara Careplex Hospital (York River Entrance, Conf. Rm. C)3000 Coliseum drive, Hampton, Va For more information contact diana at (757) 727-0427.

Connect with an MSFriend at 866-673-7436,

7am until Midnight ET.

Find someone to chat with on the web at www.msworld.org

sOUThsidE aNd NC pENiNsULa

TOLL FREE NUMBER 1 800 344 4867 | 23

CHAPTER STAFF Sharon L. Grossman, MSCIR Chapter president and Chief professional officer [email protected]

Robyn M. Hirsch, MSCIR programs and services director [email protected]

karla McCarraher director, special Events [email protected]

Michelle R. Derr Vice president of Finance and administration [email protected]

Shannon R. Rice director, Community development [email protected]

A copy of our organization’s financial statement is on file with and available through the State Division of Consumer Affairs in the Department of Agriculture and Consumer Services, upon request.

dId YoU KnoWtHat ORaNgE Is tHE

nEW GREEn?Help us “Go orange!” the national ms

society is developing* an email list of those folks who would like to receive the msConnection as an e-newsletter

sent directly to their inbox! If you would like to help us conserve, send an email to [email protected] with the

subject line “Go orange!”

* please be patient as we work out developing this new delivery method.

NON-PROFITORGANIZATION

U.S. POSTAGEPAID

Norfolk, VAPermit #162

Hampton Roads Chapter

760 Lynnhaven Parkway Suite 201Virginia Beach, VA 23452

2012 spring msconnection

Documents

multiple sclerosis patients

valuable information

hampton roads chaptermoving

hampton roads chapterinside

ms research

ongoing treatment

professional caregivers

small world