Summer 2010 MSConnection

MOVING TOWARD A WORLD FREE OF MS | Summer 2010

INSIDE THIS ISSue

HampTon roadS CHapTer

Walk mS 2010page 3

2010 Scholarship Winners!page 4

eat Less and prosperpage 6

Spring Into action!page 13

HISTORIc WILLIAMSbuRG cHALLENGE WALk MS SEpTEMbER 25 & 26, 2010 cROWNE pLAzA FORT MAGRuDER

There are only 10 Challenge Walks in the entire country and WE are producing one right here in Hampton Roads.

Challenge Walk MS is a 30-mile, 2-day walk raising essential funds for education, direct support, advocacy, and research for people living with the challenge of MS. It’s not about being athletic, it’s about showing compassion. It is truly about accomplishing in two days what many never accomplish in a lifetime, much less attempt.

Join us as the Hampton Roads Chapter organizes our 2nd Annual Challenge Walk MS in the historic triangle of Williamsburg, Yorktown and Jamestown, Virginia. Our host hotel is the Crowne Plaza Williamsburg at Fort Magruder, our start location will be Surrender Field in Yorktown and Saturday’s route will be through the Yorktown battlefields - beautiful and historic venues that will draw walkers from all over the country. We need your help in a myriad of ways.

Historic WilliamsburgWalk 2010

COnTInuEd On PAgE 7

cOMMuNITY cALENDARPrograms in this section are not organized by the national Multiple Sclerosis Society.

Multiple Sclerosis Educational Group

The MS 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 pm neurosciences 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.

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.

© 2010 national Multiple Sclerosis Society, Hampton Roads Chapter

OFFIcE cLOSING:The chapter office

will be closed June 9-11, 2010.

2 | JoIn THe moVemenT: nationalmSsociety.org

The national MS Society Hampton Roads Chapter will hold its Annual Membership Meeting in October. during that meeting the members will elect the Board of Trustees for the coming year. If you are interested in serving on the Board, or would like to propose an individual for consideration by the nominating Committee of the Board, please submit a letter of interest and resume to:

nominating Committee, Hampton Roads Chapter 760 Lynnhaven Parkway, Suite 201 Virginia Beach, VA 23452.

ToLL Free numBer 1 800 344 4867 | 3

Walk MS is celebrating its 21st Anniversary! How many have you done? Register today at www.fightMS.com to join the movement!

And while you’re registering, invite your friends, family, and co-workers to kick-off the fall season! Start

off the day with an invigorating walk then enjoy the crisp fall weather in a festive atmosphere with food, moonwalks, contests and more. don’t forget to bring the funds you raised to help us free the world of MS. After all, that’s what it’s all about!

Before each Walk MS begins, we will have a special wish ceremony. Wish for a day when there is no more MS; when all mommies and daddies can walk and play with their kids. Remember that wish as you walk with hundreds of others who have made similar wishes.

EVENTS

Register for Walk MS online at www.fightMS.com

or call the chapter office at 757-490-9627 and we’ll register

you over the phone! We’re looking forward to seeing

you in the fall!

WALk MS 2010! 21 YEARS OF FuN FOR EVERYONE!

cHOOSE FROM TWO WALk MS LOcATIONS:

Saturday, October 2 at Fort Eustis on the Peninsula

Sunday, October 3 at Mt. Trashmore in Virginia Beach


TuNE IN TO “MS FROM A TO z” ONLINE

MS from A to z features MS experts speaking on a range of topics such as alternative medicine, cognitive issues, depression, employment, new directions in research, pain, vitamins and more.

nationwide access to these once-a-month episodes is available at researchchannel.org (search for “MS from A to Z”). The first episode, which aired on February 2nd, featured an overview by dr. george Kraft, principal investigator at the university of Washington Multiple Sclerosis Rehabilitation Research and Training Center.

Episodes can be watched online at any time, or listened to as a downloaded MP3 file, so there’s really no reason to miss a single one.

Plan to tune in. This online series is produced by the university of Washington.

NEWS

cONGRATuLATIONS TO THE 2010 ScHOLARSHIp WINNERS!The national MS Society hears all too often that the economic consequences of MS delays or prevents qualified students from attending college. The challenges of living with MS make funding a college education hard and there are very few known sources of scholarship assistance specially targeted for these families.

The national Multiple Sclerosis Society strongly believes that MS shouldn’t stand in the way of an education. Therefore, in 2003 the Society established a scholarship program to specifically help these highly qualified students achieve their academic potential.

The Scholarship Program annually recognizes high school seniors and graduates across the country who have MS or who have a parent with MS. Scholarship finalists are chosen on the basis of demonstrated financial need, academic record, leadership and participation in school or community activities, work experience, statement of educational and career goals, an outside appraisal, unusual personal or family circumstances, and an essay on the impact of MS on their life.

To learn more about the Scholarship Program, visit www.nationalMSsociety.org/scholarship.

THe HampTon roadS CHapTer WouLd LIke

To CongraTuLaTe our THree 2010

SCHoLarSHIp WInnerS:kristin buckchelsea Hill

Alexis porter


IN MS, RELATIONSHIp MATTERS

When you know how to take charge as a couple, MS doesn’t have to rule your relationship.

MS doesn’t make relationships easier, but it can make them matter even more. The Society’s amazing Relationship Matters program for couples living with MS has been making a powerful difference. As one participant put it, “After 22 years I thought we were pretty good (but) I learned a lot of new ideas.”

Classes are offered in person, online and via teleconferences, so couples may choose the format that best suits their lifestyle and comfort zones. All offer interactive curricula on challenges related to MS.

Registration is ongoing. Just call 757-490-9627 or e-mail [email protected].

Photo courtesy of Christian Brown

A Relationship Matters class in action

Funding for this program is provided by u.S. dept.of Health and Human Services, Administration for Children and Families, grant: 90FE0090

LEGISLATIVE upDATEIt has been a busy legislative season in Virginia. The primary focus of Virginia legislators has been on the 2010-2012 state budget. Facing an unprecedented $4 billion deficit, legislators sought to fill the gap with severe cuts to state programs such as Medicaid. The proposed cuts threatened many of the services provided through Home and Community Based Waivers such as respite care. The cuts also threatened to halt new enrollment into Medicaid Waiver programs.

MS Activists testified at all five budget hearings across the state and worked with the Healthcare for All Virginians Coalition to write letters, email, call, rally and visit policymakers. They shared their stories and asked legislators to protect services for the most vulnerable Virginians. due to the efforts of our volunteers and many others across the state, health care cuts have been softened in the final bill with the expectation that Virginia will receive additional funding from the Federal government and by shifting cuts to other budget areas.

In January, over 40 MS Activists participated in our annual MS Lobby day - gathering in Richmond to meet with legislators and discuss our 2010 policy priorities. These volunteers asked their legislators to improve access to affordable housing, increase access to accessible transportation, expand access to expensive disease-modifying therapies and protect services for Virginia’s most vulnerable residents. In conjunction with our visit to Richmond, we held our first ever Virtual Advocacy day. Participants followed our advocacy efforts on twitter, updated their Facebook pages and sent emails to their legislators informing them of our policy priorities.

As a result of their visit to Richmond, MS Activists helped pass several bills that will positively impact the MS community. One such bill provides that the state will assess the needs of older Virginians and people with disabilities and plan for the future by developing a blueprint for livable communities and long-term services and supports. In regards to transportation, from now on, permanent and removable windshield placards shall not show the name, age, and sex of the person to whom they are issued. Instead, holders will be required to carry disabled Parking Placard Identification Cards issued by the dMV. In the area of housing, The department for the Aging will be required to publicize guidelines on universal design and visibility features to make structures and dwellings accessible for older Virginians and people with mobility impairment. We also worked with the Alzheimer’s Association and the Virginia Association for Centers of Independent Living to pass a bill that allows consumers to direct others to perform state funded health care tasks that would have otherwise been self-administered, such as giving injections.

Furthermore, the general Assembly passed House Joint Resolution 341 – declaring the second week of March, this year and in each succeeding years, MS Awareness Week in the Commonwealth!

Several other important bills were passed by the Assembly and presented to the governor. Legislators reconvened in Richmond on April 21st for the “veto session” – during which bill amendments put forth by governor Mcdonnell were addressed.

For more information about our state advocacy efforts or to learn about other bills that have passed, please contact Ashley Chapman, Virginia Statewide Advocacy Manager, at [email protected].


STATE ADVOcAcY


EAT LESS AND pROSpERBy aL TaInSky

Were I to eat anything I wanted I would be as big as a house. This doesn’t bode well for a person who never rises from his chair. Were I to gain weight my backside might be riddled with pressure sores. Without aerobic exercise calories are not burned up. A wheelchair user like me needs fewer calories to thrive.

Will is at the crux of what I propose. It is a daily exercise of will. Watching what I eat is entertaining. Am I not the master of my own universe?

A healthy lifestyle can be had counting your calories every day. Fresh fruit and vegetables are both low calorie and filling. Eat a ¼ cup of vanilla yogurt and a ¼ cup of granola for breakfast. Or eat a ½ cup of yogurt and save calories for

your dinner allotment. The permutations are endless. Want half and half in your morning coffee? Add calories to your daily allotment and subtract elsewhere.

need to snack in the afternoon? I eat six peanuts savoring each nut individually. When dinner time comes I chow down with gusto. I have a surplus of calories to use any which way I like.

Less really is more. Less food can mean more vitality, mental sharpness, physical comfort and appealing appearance.

A large salad dressed with olive oil and balsamic vinegar is the centerpiece of a healthy low-calorie dinner. Want a sprinkling of croutons? Add a few calories (check the nutrition facts label on the package to see exactly how many).

A tart green apple is approximately 80 calories. Pair it with four or five slices of sharp cheddar and you’ve got dessert. Or end dinner with four or five slices of brie coupled with a sliced pear. A dessert fit for royalty!

White rice and potatoes will constipate you. Eat buckwheat groats instead. Cooked in water they taste like sawdust. Cooked in low-fat chicken broth they are a tasty side dish.

Count your calories, it works. A leaner, healthier life is a result you can achieve even in a wheelchair. I’ll be celebrating my 100th birthday in 41 years. Stay hungry. Stay sharp. Stay alive.

LIVING WITH MS

In general, a quadriplegic person needs 10.3 calories

per pound per day to maintain their body weight

– and an ideal weight is 10-15% less than the weight

listed on standard height and weight charts. Al’s advice about counting calories is

excellent. We’d also suggest consulting a nutritionist for

help selecting foods with sufficient fiber and nutrients and strong personal appeal.

-nancy Reitman, Rn, national MS Society

Professional Resource Center

WHAT MIGHT WORk FOR YOu?


WALkYou can accept the challenge to walk and this will be the greatest adventure you will ever take! Over two days, you will walk farther than you could have imagined and have fun doing it. You will meet people who will become friends for a lifetime and achieve more than you ever thought possible all the while raising money to move us toward a world free of multiple sclerosis.

pROcuRE We will be hosting hundreds of walkers from around Virginia and across the nation. The eyes of the national MS Society will be upon us and we need YOuR help to ensure the very best in southern hospitality for our guests. We’ll need help in securing donations of all of the various and sundry supplies and support needed to hold such a significant event. We want welcome baskets in each room, rest stops stocked with healthy snacks, fruit, and energy drinks. We’ll need port-a-johns, route markers and other support materials. Imagine taking care of more than 300 guests for 2 days and 30 miles and you can begin to understand our needs. Perhaps you have access to or ideas about how to get the donations we need.

VOLuNTEERAs with all of our Chapter events, volunteers make it happen. The Challenge Walk MS has several types of partners …. Crew Members, Super Crew Members and volunteers. Crew members make a commitment to help before, during and after the event and take a leadership role. Super-crew members are extra special - on top of their help, they also take on the challenge of raising money. Volunteers take a shift or two during the weekend – perhaps manning a rest stop or registration. Whichever you may choose, all jobs are important to the success of the event and the Chapter!

Those who accept one of these challenges believe that one long journey will ultimately shorten the road to free the world of multiple sclerosis. Won’t you?

For more information and to register, visit our online Challenge Walk MS Headquarters at www.fightMS.com or call 757-490-9627.

COnTInuEd FROM COVER

LIVING WITH MS

WHEN THE DIAGNOSIS IS pRIMARY pROGRESSIVECall 757-490-9627 for your free copy of primary progressive Multiple Sclerosis: What You Need to know.

In this 156-page-book, experts dr. Jack g. Burks, dr. nancy J. Holland and dr. diana M. Schneider address symptom management, treatment options, rehabilitation, technology and adaptations, quality-of-life issues, care-partner resources and much more.

The book, jointly sponsored by the Society and the Multiple Sclerosis Association of America, comes with a companion dVd, featuring five people who are living with primary-progressive MS. Their comments also appear throughout the book, grounding the advice in real-life situations.

The book and dVd were developed following recommendations from a Society task force on the needs of people affected by this type of MS. Publication and free copies to people with primary-progressive MS have been made possible by a generous educational grant from genentech.

For more facts and strategies, visit our online webcast series at nationalMSsociety.org/ppmsweb.

STAY INFORMED ON ccSVI

There’s been a lot in the news lately about CCSVI, a blood flow drainage abnormality in the brain and spinal cord that some studies indicate may be linked to the damage wrought by MS.

The Society is pursuing this potential MS lead by undertaking the funding of new research in CCSVI (chronic cerebrospinal venous insufficiency) in MS and has invited investigators worldwide to apply for grants on the topic. We’re collaborating with the MS Society of Canada to convene an international panel of experts to conduct an accelerated review of proposals and working with our sister MS Societies around the world to assure that our research strategies are coordinated. new CCSVI research projects are expected to begin July 1, 2010.

TRACK THE STORY

To stay up-to-date on the latest developments on CCSVI research, visit nationalMSsociety.org/ccSVI.

ORAL DRuGS MAkE pROGRESS• Oral drugs for MS are getting even closer to the doctor’s office, with one, Ampyra, now available by prescription.

Here’s the scoop:

• The FdA approved Ampyra (dalfampridine, Acorda Therapeutics) in January for its ability to improve walking in people with MS. People with MS and their healthcare providers can call 888-881-1918 for information on Ampyra, including patient assistance programs and insurance coverage. (The drug is costly: wholesale price is estimated to be $1,056 for a 30-day supply.) Watch dr. Patricia Coyle talk about what Amypra does, how it works and possible side effects at nationalMSsociety.org/ampyra.

• Gilenia (formerly called FTY720 or fingolimod) in an exciting development has been granted a priority review by the FdA. This means it could take as little as six months to determine if this will become the first oral disease-modifying drug for MS. Read the studies thus far at nationalMSsociety.org/gilenia

• With positive results in the latest studies, cladribine, another oral disease-modifying drug, is in the process of applying for marketing approval. Visit nationalMSsociety.org/news and type “cladribine” in the search field to learn more.

get the latest news on oral drugs sent directly to your inbox. Visit nationalMSsociety.org/signup to create a user profile and start getting the MS enEWS!

Society leaders meet with CCSVI researcher Dr. Paulo Zamboni (second from left) at a NYU briefing chaired by Dr. Joseph Herbert (second from right).


RESEARcH


MS AcTIVISTS MAkE MS A pRIORITY ON cApITOL HILL IN MARcH

At the 2010 MS Public Policy Conference held at the beginning of March, MS activists pushed forward major initiatives that could lead to increased MS research, in turn greatly improving understanding of the disease itself.

MORE KnOWLEdgE nEEdEd

Currently, there are no accurate estimates of how many people in the united States have MS. A national MS registry could provide invaluable information on the incidence and prevalence of the disease, allowing researchers to investigate potential geographic, genetic or environmental risk factors.

Toward this important legislation, MS activists, who gathered in Washington, d.C., sought co-sponsors for the National MS and parkinson’s Disease Registries Act.

SuPPORTIng RESPITE PROgRAMS

The availability of respite care for all age and disability groups is at a dismal low. While the Lifespan Respite care Act was passed in 2006, the program has been severely underfunded ever since its creation.

Activists urged legislators to commit a much-needed $94.81 million to help stressed-out families and caregivers.

InCREASIng RESEARCH FundIng

For the more than 20,000 u.S. veterans diagnosed with MS, as well as all others living with the disease nationwide, more research funding from the department of defense could make a real difference.

Activists requested a $15 million appropriation to the DoD’s congressionally Directed Medical Research programs for MS research. Supportive legislators are already taking action, circulating a dear Colleague letter in the House of Representatives and in the Senate.

To find out more about MS advocacy and how to get involved in public policy issues, visit nationalMSsociety.org/advocacy. Or call our office to find out about state and local issues.

FEDERAL ADVOcAcY

An activist meets with his legislator.

Photo: Scott Crawford

Photo courtesy of Scott Crawford

cONSIDERING LIFE INSuRANcE? A bROkER cAN HELp By kIm CaLder

It’s nearly impossible to qualify for disability or long-term care insurance after being diagnosed with MS.

But life insurance is another matter.

COMPARISOn SHOPPIng IS A MuST

The premium for a person with MS will be higher, but the policies are out there. Shopping for the best, most affordable policy can be a time-consuming and complex challenge. A good insurance broker will not only do the research and educate a buyer about appropriate products, but will help with the application process and negotiations.

Licensed independent insurance brokers are professional advisors with expertise in the insurance marketplace. Some focus exclusively on one insurance company’s products and act as sales agents, or “captive” brokers, negotiating, or “brokering,” sales for that

company alone. Others develop expertise in specific types of policies, or “niche markets,” for certain types of clients, such as retirees, newlyweds or even people with chronic diseases.

An “IMPAIREd RISK” BROKER?

An impaired risk specialist is particularly knowledgeable about what is available for people with health conditions or other risk factors. Some impaired risk brokers are even considered super-specialists, as they specialize in a few specific impairments, such as MS.

If you choose to work with a broker, select one with whom you feel comfortable and prepare to be very candid about your disease and circumstances. A good broker can help you determine if your expectations are realistic, your goals are clear and your timing is right.

never hesitate to ask a broker for professional references, and check them out.

If someone refers you to one broker in particular, ask why. What did your referral source like about how this broker worked?

THE BOTTOM LInE

It is ultimately your responsibility to understand the terms of your insurance policy, and to make best use of it. Take advantage of the time when your broker is gathering your information and exploring your options to ask lots of questions.

It is not always possible to know what your final rate will be until you apply, but you do have the choice whether or not to accept or keep a life insurance policy during the “free look” period after it is issued.

Kim Calder is director of Insurance Initiatives for the Society.


MONEY MATTERS

ToLL Free numBer 1 800 344 4867 | 11

LET uS cOuNT THE WAYSThere are many ways that you can make a significant gift today or plan a gift for the future and join the movement to create a world free of MS.

gIVE A gIFT TOdAY

give online. Set up a tribute or memorial fund to honor someone special; become a monthly sustaining donor; give a one-time gift using your credit card. Your gifts will support local and/or national programs and services and ensure that MS research continues to develop better treatments to stop the disease process. Click the “donate” button at fightMS.com.

Mail your gift. Your check or stock gift may go to the general fund or be restricted to the research or the service program of your choice. Restrict your golden Circle membership or campaign gift by indicating your preferences when mailing it to Sharon grossman at the chapter. gifts of securities are always welcome; step-by-step instructions for dTC stock transfers are available at nationalMSsociety.org/donatestock.

PLAn A gIFT FOR THE FuTuRE

bequests. You can create a legacy by naming the Society in your will, charitable remainder trust, charitable lead trust or living trust. Your bequest will provide important support to the Society in the future and may be exempt from federal estate taxes. For complete estate and gift planning resources visit fightMS.com, click on “donate” and then “Planned giving.”

charitable gift annuity. Provide lifetime income for yourself or someone you love while supporting the Society’s mission with a charitable gift annuity. Learn how you can contract to transfer assets to the Society in exchange for

payments for life to one or two annuitants at nationalMSsociety.org/annuities.

Life insurance gifts. designating the national MS Society as owner and beneficiary of an insurance policy is an easy way to make a gift that costs you little while creating your legacy of support to the Society.

Want to talk to a person? For more information on any of these options or additional gift opportunities, please call our national gift planning specialist Carrie Radant at 1-800-923-7727 or e-mail her at [email protected].

WAYS TO GIVE

Kim, diagnosed in 2000

VOLuNTEER SpOTLIGHT

John McKee gets around, just like in the old Beach Boys song “I get Around.” The Strip he drives up and down is the Bike MS route on the Eastern Shore of Virginia, eyes open for any cyclists in need. This is exactly where you will find him the weekend of June 5 & 6, 2010 along with his co-pilot and wife, Romelda. His vehicle is loaded with water, sports drinks, snacks, sun screen and bug spray, but most importantly the knowledge of how to do quick repairs to a disabled bike or the offer of an air-conditioned ride to the next Rest Stop along the route.

A naval Aviator from 1955 – 1975, John is used to working with a co-pilot and “getting the job done.” As our Support and gear (SAg) Coordinator, John organizes and directs his team of SAg drivers, instructing them by phone and radio as to where on the route they are needed. His coordination of the SAg’s operates like a military campaign, much to the relief of any

cyclist that is just too tired to cycle another mile. Many times just riding down the road a few miles in one of the air conditioned support vehicles is all the cyclist needs to get back in the game.

John understands this well having been a cyclist since 1963. It was in 1974 due to a navy workday lunch exercise program that he became a serious cyclist. Suggested exercise choices were running, swimming or cycling. He chose cycling and soon realized how he much enjoyed it. Soon after starting the program, John was cycling from his Kempsville home to the norfolk naval Base twice a week. As he gained experience and lost weight, his commute decreased from 1hour 15 minutes to only 45 minutes! John later joined the Tidewater Bicycling Association serving as Tour Vice-President and two terms as the club’s President. Still in the saddle, John not only rides with other cyclists several times a week but will be participating in racing time trials this year, too.

It was in 2004 that John joined the SAg Team for Bike MS. In 2006 he became the SAg Coordinator. Although this is his 7th year participating in this important volunteer position, we don’t think he will suffer from the “Seven Year Itch”. Thanks John and your Team of SAg vehicles for a job well done!

INTeReSTeD IN VolUNTeeRINg? CHeCk oUT THe VolUNTeeR

SeCTIoN of oUR webSITe, WWW.FIGHTMS.cOM.

NEED SuppORT OR GEAR? MckEE IS YOuR MAN!


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SpRING INTO AcTION!2010 ADVOcAcY LETTER WRITING cAMpAIGNThis summer, join MS Activists across the Commonwealth in writing a letter to your State delegate and Senator. Tell the legislator about the 2010 legislative priority that interests you the most and share your story:

• Improving Access to Affordable and Accessible Housing • Increasing Access to Accessible Transportation • decreasing the Cost of Prescription drugs

SAMpLE LETTER:

dear delegate/Senator___________,

My name is ___________ and I am a volunteer for the Hampton Roads Chapter of the national MS Society. I am writing to tell you about one of our 2010 policy priorities and how it directly impacts my life. The issue that is very important to me personally is [insert legislative priority] Example: expanding access to disease-modifying therapies by decreasing the cost of prescription drugs.

[Your Story Here] Example: I was diagnosed with relapsing-remitting MS in 2003 when I was only 25 years old. It has been a long, difficult journey. The most challenging thing for me has been maintaining my drug therapy. Like many others with MS, it took my doctors a long time to identify my illness. As a result, I lost my job and my health insurance. By the time I was officially diagnosed, I had been hospitalized 3 times in 3 months with more than $60,000 in medical bills. I couldn’t work because I was so sick. I was a single mother with household bills that exceeded my monthly unemployment check. I couldn’t dream of how I was going to afford my MS treatment. What was I to do?! This is why the elimination of cost sharing is so important to me. We already have been stripped of so much, like the ability to walk and continue working.

[Insert Specific Request Here] Example: Please work to decrease the cost of prescription drugs. It is a critical part of patient care for people who have limited resources because of living with a chronic disease.

I will continue to be in touch with you and I hope that I will have the opportunity to visit you in your district office this year.

Sincerely, ________________

It is important for us to track our advocacy efforts. Please email a copy of your letter to [email protected] or send to Ashley Chapman, 2112 W. Laburnum Ave, suite 204, Richmond, VA 23227. If you need assistance with writing your letter, call Ashley Chapman, Virginia Statewide Advocacy Manager, at (804) 591-3048.

Follow-up with your legislator by visiting them in their district office! Contact Ashley for tips on how to conduct a legislative visit.

THAnK YOu FOR BEIng An MS ACTIVIST!

STATE ADVOcAcY

Mildred Dix’s 85th birthday Mildred dix William & nina dix dorothy Ferraro

Nancy Imig Ronnie & Elaine Henk

Jo ponsford Chief of Staff Office HQ SACT norfolk

If you would like to make a memorial

or tribute gift, please contact the chapter at 757-490-9627

or visit www.fightMS.com


Terrie Lynn Anderson Leslie Barker Tracy Barkley

Dorothy Astrum Miles & Ellen Westbrook

Anne Lynn Atchley Scott & Cathy Miller Albert & Robbie Selkin Joe & Terri Vita

kevin corazza Morris & Judith Busby

Robert cunningham Thomas & Carolyn Betz Brian, ginnine & Kyle Carlson John & demaris Carlson Ralph & Francis Cruise Ann dobson Mildred Friend Virginia griffin Patricia Ingmire-Richard Shelly Mcginnis & Bill Lackland William & Karen Sawtelle grant & Carolyn Shaw Signature Financial Management, Inc. Kitty & JoAnne Stevenson Philip & Margaret Tinaro John Van Huyck dorothy Walsh

Robert Joseph Gordon daniel & Joan Canfield Harvey & Velma Langley

Lorraine Hamilton Annette Brownley

Leland Imig Ronnie & Elaine Henk

Robert patrick kearney Tommie Karns

Elizabeth J. Lamy Siegrid doud gerald & Catherine O’Brien

Mary Grace Lund Louis & Edith Croteau george & nancy nichols gail Vandergrift

carson William Mason II Emilee Mason & Family

Natalie Dodge-Myers gallery Salon & day Spa Christopher & Caroline Ramos

Shirley Newman Larry & Candy Familant george & nancy Lecuyer Joanne Roos

Heidi Sailer-brophy Kenneth & Linda Chipkin

Margaret Surgeonor Jim & Liz urban

Diane Waechter Elizabeth Murdock

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 January 2010 and mid-April 2010. The memory of a loved one, or the excitement of a special occasion, lives on through these thoughtful gifts.

MEMORIAL GIFTS TRIbuTE GIFTS

DONATIONS

June 2, 2010Gloucester Group1st Wednesday of the month @ 10 amRiverside Wellness and Fitness Center 7516 Hospital drive, gloucester, VA

June 3, 2010African American Inspirational Group 1st Thursday of the month @ 10:30 amHampton Public Library936 Big Bethel Road, Hampton, VAFor more information contact d’Andre at (757) 660-3455 or [email protected].

June 8, 2010Virginia beach Morning Group 2nd Tuesday of the month @ 10 amKempsville Public Library832 Kempsville Road, Virginia Beach, VA For more information contact Pete at (757) 497-6594 or [email protected].

June 9, 2010Williamsburg Group 2nd Wednesday of the month @ 5:30 pm James City County/ Williamsburg Community Center 5301 Longhill Road, Williamsburg, VA For more information contact JoAnn at (757) 220- 0902.

June 10, 2010peninsula Evening Group 2nd Thursday of the month @ 5:30 pmSentara Careplex Hospital (York River Entrance, Conf. Rm. A)3000 Coliseum drive, Hampton, VA For more information contact diana at (757) 722-2492.

June 21, 2010Elizabeth city Group 3rd Monday of the month @ 2:30 pmFor group location and/or more information contact Melvin at (252) 335-9158.

June 15, 2010chesapeake 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.

June 16, 2010Suffolk 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.

June 23, 2010Southside Group 4th Wednesday of the month @ 3 pmAs of printing-Location TBA For group location and/or more information contact the chapter at (757) 490-9627.

HAMpTON ROADS cHApTER SELF HELp GROup LISTINGFor more information on any of the following groups contact (757) 490-9627 unless otherwise noted.

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

HELp & SuppORT

ToLL Free numBer 1 800 344 4867 | 15

cHApTER STAFF Sharon L. Grossman, MScIRChapter President and Chief Professional [email protected]

Robyn M. Hirsch, MScIRPrograms and Services [email protected]

karla MccarraherOffice [email protected]

Michelle R. DerrVice President of Finance and [email protected]

Shannon R. Ricedirector, Community [email protected]

kathryn G. Whitlockdirector, Special [email protected] 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?At least at the national MS Society

it is! Help us “go Orange!” by requesting the MS Connection

as an e-newsletter sent directly to your Inbox! It will be in .pdf format and will

have all of the same information that you currently receive. If you would like

to help us conserve, send an email to [email protected] with the subject

line “go Orange!”

ANGEL RIDERS By eILeen kIngan

About the Author: Eileen Kingan was diagnosed with multiple sclerosis in her twenties. She has not been able to ride in the Bike MS Ride because of the progression of her disease, but that hasn’t stopped her from volunteering at Rest Stops every year. In addition, now for the fourth year, her daughter Renee will ride in her honor. Eileen is grateful for all the cyclists who ride for those who can’t and the many volunteers that make this magical weekend possible. To the right is a poem she has written to express her gratitude.

You can never have too many angels…Mine are not christmas pageant cherubs With halos askew and gossamer wings.

champions in the battle against my enemy,These cycling angels have traded halos for helmets−

Long practice rides replace celestial travel.As the riders bike through clouds of fog and mist,

Non-riding angels guard them en routeWith support that keeps their wheels in motion.

No pearly gates await,Just a finish line with cheers

And applause for a job well done.

You can never have too many angels…Mine take flight into the wind to bring heaven to earth−

A world free of Multiple Sclerosis!

Summer 2010 MSConnection

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Transcript of Summer 2010 MSConnection