Volume 28 • Issue 3 Maryland 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

NON-PROFITORGANIZATION

U.S. POSTAGEPAID

Baltimore, MDPermit # 3027

Maryland Chapter

2219 York Road, Suite 302Timonium, MD 21093

Discovery Weekend is Back! Join Us for an Unforgettable Weekend

816 JOIN THE MOVEMENT: nationalMSsociety.org

Kimberly Adams-HeldErica AmesMelony AndersonEllie BarnaChristy BattaChristie BellGary BellMelody BellMarie BennettWendy BordewischSusan BowenRobin BrownTaggart BrownDebbie BuchananMonica BurgesseMily BurtonJen CampbellJeffrey CarrollKristine CarrollBrenda CephasGeorge CephasMarie ChvatalDonna ClarkeJodi DelaneyBrian DuBuqueShawn DuffyLisa DugganJessica EvensenNicole Ferris

Janice FinkelsteinKimberly FordWendy FoxRod FryBill GavinWilliam GillErica GlassEllen GoldenMike HammesNorman HardyMarita HaywardMargaret HenryLisa HoltMel HoytMary Beth HoulihanAmy IafollaSandi JohnsonSylvia KaltreiderCheryl KnopfJulia KorzeniewskiPatti LabbeJennie LaneAliza LeichterAnthony LeonardSean LigeTricia LigeMark LiknessTiffany Loewer

Ceil MaddenRobin MarlattLisa MartinSalvatore MastelloneCarl MilesTara MitchellSandi NanayakkaraSharon OakleyLinda PascuzziDiane PaulsonJeff PaulsonApril PennKatharine PetersonKelli PolenJane PriceTimothy PurcellBJ RadheKellie ReardonCindy ReinboldGuy ReinboldLindsay ReinboldCeline RepoltCarol RitzJennifer RothLois RuffleRachel RussellMary Ryan

Lilla SalvesenCharles SchaferDebbie SchoolsCarrie ScottDennis SeaboltStacey SelleCynthia ShelbyBarbara SheltonNicole SimekCindy SolleyPaul SortinoCheryl TarteAllison ThomasCarlita TuckJeffrey WarnerSonja WarnerMichelle WebbAlison WellmanAlice WenderDeborah WerreChristina WilliamsDenise WorrellSusan YaquiantKatie YoungMelissa YoungMelissa YoungCathy Zittle

Congratulations and Thank You to Walk MS 2013’s Elite Feet Club!Elite Feet members raised $1,000 or more during the 2013 Walk MS season.

Join the National MS Society, Maryland Chapter November 15 - 17, 2013 for a fun, educational and relaxing weekend! Bring yourself or the whole family and get ready to meet others living with and affected by MS. On Saturday, hear from an expert during an educational seminar and learn how fun modified exercise can be with interactive workshops. On Sunday, interact and learn from the Maryland Chapter staff about what’s happening in the world of MS and how the Society is working to create a world free of MS.

Discovery Weekend 2013 - November 15 - 17, 2013at The Clarion Resort in Ocean City, MD• Get away for a fun and educational weekend at the beach and meet others living with and affected by MS.

*Saturday and Sunday meals are included

Cost: $145 per adult (18 years old and up) $120 - Self Help Group Leaders Discount $90 per young adult (13-17 years old) $60 per child (4-12 years old) Free for children 3 years old and under

For more information and to obtain a registration packet, please contact Crystal Leedy at 443-641-1224 or

crystal.leedy@nmss.org.

New Venue:The Clarion Resort

Jim Leedy started with the Maryland Chapter in Fall 2001 as manager of the AUTOS-4-MS vehicle donation campaign. Since then, he has spent his career evolving with the Society, eagerly taking on many new roles and responsibilities as the Chapter needed. In 2006, he added the title of Information Technology Manager to his role with the Society. Then in 2013, he became the Chapter contact for the Society’s exciting new event, MuckFest MS Baltimore.

“Having a hands-on history of working with cars and computers, it was a natural draw for me to jump at the chance to get dirty with MuckFest,” says Jim.

No matter what position he assumes with the Society, he is driven by the need to serve those in the MS community. Want to meet him and other dedicated staff? Register for MuckFest MS: Baltimore on June 29 at www.muckfestms.com!

Staff Spotlight: Jim Leedy

The Maryland General Assembly has adjourned after another session in Annapolis. 2013 brought many successes for people living with the daily challenges of MS. In February, our members traveled to our state capital to meet with their representatives in the Maryland House of Delegates and State Senate. They shared their stories about living with MS and helped educate their elected officials about what people

with MS need to be productive in our communities.The Maryland Chapter’s 2013 legislative platform included:

Enforcement of Building Accessibility CodeWhile Maryland’s Accessibility Code prevents a landlord from making changes to a rental unit (with four or more units) that would render the home inaccessible, there was no method of enforcement. This legislation makes it possible for a tenant to file an injunction so that they can stop construction before it begins. The Maryland Chapter worked closely with the Maryland Disability Law Center on this important legislation. Governor O’Malley signed the bill into law on May 2.

Advances in Telemedicine As technology has improved, so has healthcare delivery. One example of this is Telemedicine. Telemedicine is the ability to provide health care services between a patient and doctor using technology such as video conferencing and telecommunications. Telemedicine makes it possible for a patient to have a consultation with their physician even if their health provider is in another part of the state. This is especially important in rural populations and for MS patients who may be disabled or have difficulty traveling long distances to see their doctor. In 2013, The Maryland Chapter advocated for and successfully passed legislation that would improve the delivery of telemedicine services to all Maryland residents. The Maryland Chapter worked in coalition with the American Heart Association and the Maryland Rural Health Association on this legislation. Governor O’Malley signed the Telemedicine bill ito law on May 2.

Securing $10.4 million for the Maryland Stem Cell Research Fund The Maryland Chapter was also successful in securing the full amount of money appropriated by Governor O’Malley to the Maryland Stem Cell Research Fund. This fund is incredibly important and funds work currently being done to study multiple sclerosis, among other diseases.

“I am very proud of our MS activists for getting out on the front lines and in front of their representatives. They attended meetings in Annapolis, made phone calls and sent emails. In the end, the legislation we worked hard for was passed by both Chambers. We continue to advocate for change to make life better for every Marylander, especially those living with the daily challenges of MS,” says Melissa Slizewski, Director of Public Policy and Strategic Relationships for the Maryland Chapter.

This has been an incredibly successful session and the National MS Society would especially like to thank their partners in these efforts, the American Heart Association, the Maryland Rural Health Association and the Maryland Disability Law Center for their tireless work. We would also like to thank those Senators and Delegates who championed our cause and saw that our voices were heard and successful including: Senator Thomas Middleton, Senator Catherine Pugh, Senator Anthony Muse, Delegate Doyle Niemann, Delegate Susan Lee and Delegate Michael Smigiel, Sr. Finally, the Society would like to extend a very special thank you to Senator Katherine A. Klausmeier (District 8, Baltimore County) for her unwavering support of the National MS Society. Senator Klausmeier never hesitates to support our legislative platform and has sponsored the room for Maryland Action Day since 2009. She is truly a champion for our cause.

To read more about the specific legislation championed by the Maryland Chapter during Session 2013, please visit the Take Action section of www.nmss-md.org.

Success for People with MS in Annapolis

Publication of the National Multiple Sclerosis Society, Maryland Chapter2219 York Road, Suite 302 Timonium, MD 21093

Chapter President - Mark Roeder

Director of Programs and Services - Randee Sanders

Marketing Manager - Ellen Hannibal

Services Navigator - Todd Robertson

Online Marketing Coordinator - Melanie Losover

Community Programs Coordinator - Crystal Leedy

For general information: 443-641-1200 or 800-344-4867

Frederick: Melissa Ward – 443-641-1227

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.

The National Multiple Sclerosis Society does not endorse products, services or manufacturers. Such names appear here solely because they are considered valuable information. The National Multiple Sclerosis Society assumes no liability for the use of contents of any product or service mentioned. We do reserve the right to refuse advertising that appears to be inconsistent with the Society’s mission.

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 National Multiple Sclerosis Society is dedicated to ending the devastating effects of MS. © 2013 National Multiple Sclerosis Society, Maryland Chapter

Calendar of EventsProgressive MS TeleconferenceJune 12, 2013Improving Quality of Life, Isolation & Expanding your Social Network. Check our website, www.nmss-md.org for more details.

MuckFest MSJune 29, 2013Are you up to the dirty challenge? Register for our five-mile muck-filled obstacle course at www.muckfestMS.com.

Caregiver Teleconference SeriesAugust 6: Hidden Effects of MS- Relationships (Preventing Abuse)August 13: Well Spouse ContactAugust 20: How to Make Your Job Easier/Equipment Needs & Make Home More Accessible

Newly Diagnosed Teleconference SeriesSeptember 3: MS 101: Myth vs. FactSeptember 10: Treatment OptionsSeptember 17: Talking with Family/Disclosure

Challenge Walk MSSeptember 7 - 8, 2013Accept the challenge and get ready for the journey of a lifetime. Join us at our new location, the Talbot County Community Center in Easton, MD! Visitwww.challengewalkMSmaryland.org for more details.

Bike MS: Bike to BordeauxSeptember 28, 2013Join us for the second Bike to Bordeaux at beautiful Linganore Winecellars in Mt. Airy, MD! Visitwww.bikeMSvineyard.org for more details.

Everyday Matters Program: Coming in SeptemberStay tuned for a new, in-person National MS Society program this Fall with an exciting five-week curriculum called Everyday Matters: Living your Best Life. Put positive psychology to work in your life!

2013 Research Symposium and Volunteer AwardsOctober 21, 2013Hear the latest MS research from experts in the field and honor the volunteers that are dedicated to bringing us closer to a world free of MS.

Discovery Weekend 2013November 15 - 17,2013Join us again for a fun and educational weekend at the beach for Discovery Weekend! Visit our website for more details - www.nmss-md.org.

TOLL FREE NUMBER 1 800 344 4867 382 JOIN THE MOVEMENT: nationalMSsociety.org

Participants at Maryland Action Day 2013 in Annapolis, MD.

5TOLL FREE NUMBER 1 800 344 4867 5

The Chapter’s successful signature fundraising events: Walk MS, Bike MS, Challenge Walk MS and Muck Fest MS would not be possible without the tireless support and hard work of our event volunteers. Whether they are serving on a committee, securing sponsorship, hosting a rest stop, cheering at the finish line or making peanut butter and jelly sandwiches their work is crucial to our success. A successful candidate supports one or more of the Chapter’s signature fundraising events.

Ed Duggan Community Champion Awards2013 Nomination Form

Please complete the form and return by August 1 to:National MS Society, Maryland ChapterAttn: Ed Duggan Community Champion Awards 2219 York Road, Suite 302 Timonium, MD 21093

Fax: (443) 641-1201If you have any questions please call (443) 641-1199.

EVENT VOLUNTEER:

HEALTHCARE PROFESSIONAL: CORPORATE PARTNER:

EXCELLENCE IN MISSION ADVANCEMENT:

Please nominate an individual in one of the following categories for the Ed Duggan Community Champion Awards 2013 by checking the corresponding category below and completing the form on the reverse side. Award recipients will be announced at the Research Symposium and Volunteer Awards on October 21, 2013. One winner from each category will be selected.

Our programs and events would not be possible without the support of corporate partners who invest human and financial resources into the movement toward a world free of MS. Corporate sponsors encourage volunteerism among their employees, contribute cash and in-kind sponsorship and support and establish corporate teams. They may also directly fund research and programs for people with MS through foundation grants and outright corporate gifts.

This is someone who is dedicated to doing whatever they can to further the mission of the National MS Society. This could include leading a self-help group, chairing a committee, organizing a new program or event, funding a new initiative or organizing his or her community into action. A successful candidate is a mouthpiece for spreading the mission of the National MS Society.

This person is involved in the delivery of healthcare while affecting the quality of life and care of people with multiple sclerosis. Your nominee should be a caring person who guides research efforts, patient care and/or clinical advances. Examples of Healthcare Professionals are medical doctors, nurses, neurologists, physical therapists, home healthcare specialists and others who impact the care and health of people living with MS.

COM

MU

NITY CH

AM

PION

AWA

RDS

4 JOIN THE MOVEMENT: nationalMSsociety.org

Monday, October 21, 20135:30 p.m. - 9:00 p.m.Martin’s West6817 Dogwood Rd., Baltimore, MD 21244

Thank you to everyone who participated in Walk MS: Maryland 2013! More than 8,000 people were part of Walk MS in Maryland this year and together they helped up raise more than $1 million! When you participate in Walk MS, the funds you raise give hope to the more than 10,000 people living with MS in Maryland. The dollars raised support promising research to stop the disease, restore function that has been lost and end MS forever. Your donations also help fund programs for people living with MS right here in our community.

Walk MS connects people living with MS and those who care about them. Your participation moves us closer to our ultimate destination: a world free of MS.

Walk MS Raises Over $1 Million

Tickets: $10A plated dinner will be served.Register at www.nmss-md.org.

2013 Research Symposium and Volunteer Awards

The Maryland Chapter is pleased to announce that the 2013 Research Symposium and Volunteer Awards will be held the evening of Monday, October 21, 2013 at Martin’s West. MS experts Peter Calabresi, M.D. of the Johns Hopkins MS Center, Walter Royal, III, M.D. of the Maryland MS Center. Dr. Ellen Mowrey from the John’s Hopkins MS Center and Dr. Robert Shin from the University of Maryland will share their expertise in an open panel discussion. In addition to the research symposium, the evening will include the election of the FY2014 Chapter Board of Trustees and the presentation of the 2013 Ed Duggan Community Champion Awards.

TOLL FREE NUMBER 1 800 344 4867JOIN THE MOVEMENT: nationalMSsociety.org 76

Please complete the form and return by August 1 to:National MS Society, Maryland ChapterAttn: Ed Duggan Community Champion Awards 2219 York Road, Suite 302 Timonium, MD 21093

Fax: (443) 641-1201If you have any questions please call (443) 641-1199.

Ed Duggan Community Champion Awards2013 Nomination Form

YOUR NAME

Company Name (optional)

Home Address

Phone Number

E-mail Address

NOMINEE NAME

Address

Phone Number

E-mail Address

Your relationship to the nominee

I am nominating this individual because:

Please include an additional sheet if more space is needed.

Melinda Deremer knew something wasn’t right when she was running errands at work one day. She wanted to run into the next building to get out of the rain, but the message just didn’t make it from her brain to her feet. She went to see her doctor and after a battery of tests, Melinda got an MRI and was diagnosed with MS. Knowledge of MS was limited in their community in rural central Pennsylvania when Melinda was diagnosed more than 20 years ago. Melinda’s sister participated in the inaugural Challenge Walk with the Greater Delaware Valley Chapter in 2002 and invited Melinda and her husband, Tom, to come to the closing ceremony. “We were hooked,” Melinda says; they’ve been participating ever since.

The Deremers have made the journey to Challenge Walk MS: Chesapeake Challenge on Maryland’s Eastern Shore since 2007. “We’ve made some fantastic friends there,” Tom adds. “Finishing that walk is such a deep feeling.”

Tom pushes Melinda the whole way -- 30 miles split between two days -- in her wheelchair. They’re both quick to mention how many friendships they’ve made and how many stories they’ve heard at Challenge Walk.

“It’s really fun and nice for us to be around so many people who have challenges like we do,” Melinda explains. “It makes you feel better knowing you’re not alone in the world. You can support people and they can support you. They can give you inspiration and gets you through to the next year.”

Melinda explains that even though she’s being pushed, it’s a challenge for her too. “I’d like people to ride 30 miles in a wheelchair,” Melinda says. “Even with extra foam padding and stops every few hours, riding for that long can be tough.” Challenge Walk isn’t just a physical challenge, but a financial one too. All participants commit to raising at least $300 to help fund research into the cause, cure and treatment of MS. The couple knows that they can count on support from their friends and neighbors to get them to their goal. “It warms your heart to know that you have that many friends and relatives that care that much to donate to you,” Melinda explains.

“If we can raise money to help find a cure, we might eliminate this challenge for some other young couples,” Tom adds. “But it feels good and as long as she’s able and I’m able, we’re going to do it.”

Embracing the ChallengeRising above obstaces to create a world free of MS

Melinda and Tom Deremer cross the finish line at Challenge Walk MS: Chesapeake Challenge 2012.

Challenge Walk MS: Chesapeake Challenge is September 7 - 8 at the Talbot County Community Center in Easton, MD. Participants will walk through beautiful waterfront communities like Tilghman Island and Kent Island. Accept the challenge and experience all that Challenge Walk has to offer. Learn more at www.challengewalkMSmaryland.org or contact our Challenge Walk Coordinator, Samantha Flottemesch, at 443-641-1207.

Submit a nomination form and receive a MS Society branded orange wristband!

Get dirty at MuckFest MS: Baltimore this June 29, 2013 at the Trail-Way Speedway in Hanover, PA!

Our five-mile MuckFest MS course will wipe you out, literally. It’s got more thrills, spills and sustained laughter than any obstacle run in the world! Be prepared to run, slosh, climb and slide your way through mud-filled trenches, slip-n-slide pits and moon-sized craters filled to the brim with glorious muck.

Our post-race party is one more thing that sets us apart. It’s a tailgate with music, great food, beer and a muckload of other surprises!

All muckers receive a bib and timing chip to be picked up on the morning of the MuckFest MS. Your registration also includes lunch (and two beers for adult participants) and an official MuckFest MS t-shirt.

Best of all, 100% of fundraising dollars for this new event go to the National MS Society!

MuckFest 2013 in Baltimore!

Register at www.muckfestMS.com

On the evening of March 2, more than 700 people gathered at the Baltimore Marriot Waterfront Hotel for the National MS Society, Maryland Chapter’s 20th Annual Dinner of Champions. David Hepfinger was recognized as the 2013 MS Champion of Hope for his professional excellence and commitment to the community.

David J. Hepfinger is President and CEO of Weis Markets Inc. based in Sunbury, PA that operates 163 stores in five states, including Maryland. Under his leadership, Weis Markets has worked to deliver an exceptional shopping experience while giving back to the communities

it serves. He has guided the company through a significant period of growth and expansion. Just as important, Mr. Hepfinger and his company’s associates actively support community and charitable endeavors throughout its five-state market area, including partnerships with community-based health care organizations and food banks.

Through ticket sales, generous sponsorships and a silent auction bursting with exciting packages, more than $400,000 was raised for MS research, programs and local services.

David J. Hepfinger, President and CEO of Weis Markets, Honored at the National MS Society Dinner of Champions

9TOLL FREE NUMBER 1 800 344 4867

Emerging evidence across the board suggests that exercise doesn’t just keep us physically fit, it helps our brain function better, too. Scientific presentations on exercise, rehabilitation and quality of life issues at the American Academy of Neurology’s annual meeting in March suggest this holds true for people living with multiple sclerosis, as well.

Exercise’s good effectsA small study from National Multiple Sclerosis Society-supported scientists at the Kessler Research Institute in New Jersey found that 30 minutes of aerobic exercise done three times a week over three months improved memory and increased the volume of the hippocampus, a part of the brain involved with memory. These preliminary results will hopefully encourage further studies that will yield more definitive conclusions and maybe even recommendations.

Another study examined the potential of long-term aerobic exercise to build endurance in people with MS. This study involved 60 people split into two groups: people who experienced fatigue and people who did not. Both groups performed individualized endurance exercises using treadmills. After six months, both groups showed improved oxygen consumption. However, those who started out with fatigue showed improvement in their fatigue scores, but it took at least nine months of the program to see a difference. So while you may not feel the effects of exercise at first, persistence can pay off!

Exercises for the brainSome very interesting data illustrating how the brain reorganizes to adapt to MS damage was presented by a research team from the San Raffaele Hospital in Milan, Italy. This team looked at the impacts of a 12-week computerassisted course that focused on training to increase memory and attention (the course was previously reported to improve attention and executive thinking abilities). Using functional MRI, which allows a real-time glimpse of the brain at work, they found indicators that brain activity had increased in specific areas. This improvement appeared to persist at least six months after the training was completed.

Exercise and The Brain By: Bruce Bebo, PhD

Researchers from Milan and from Kessler also reported that people with MS with more “brain reserve” (larger brain size) and more “cognitive reserve” (increasing the ability to withstand or postpone MS-associated decline in cognition with activities such as doing puzzles or playing music) were at lower risk for cognitive changes associated with brain lesions. Even when brain size is accounted for, those with more cognitive reserve appear to have lower risk for cognitive changes.

There’s nothing any of us can do about the size of our brains. But growing evidence suggests that people may be able to build cognitive reserve by engaging in enrichment activities (Words with Friends anyone?). It’s exciting to think that actions we can take, such as some mental and physical training, can actually alter brain circuits, improve brain activity and possibly help slow the progression of MS. It’s exciting to think that actions we can take, such as some mental and physical training, can possibly slow the progression of MS.

Summaries of the meeting can be viewed on the AAN’s website at www.abstracts2view.com/aan, or visit www.nationalMSsociety.org/research for an overview of MS-related research presented at the meeting.

Bruce Bebo, PhD, is associate vice president of Discovery Research at the National MS Society, and was previously a research immunologist focusing on the influence of sex hormones on MS. He is a passionate Society volunteer, fundraiser and advocate, fueled in part by the fact that his mother has lived with MS for more than 30 years. Read more of Dr. Bebo’s blog posts about research presentations at the annual AAN meeting at blog.nationalMSsociety.org, where this was originally published.

For more on cognitive issues and MS,visit nationalMSsociety.org/cognition.

To learn more about exercise and MS, visitnationalMSsociety.org/exercise, or call

1-800-344-4867 to find out about exerciseprograms in the area.

ResourcesGala Chairman JR Paterakis, Mark Boucher, David J. Hepfinger and Kurt Schertle at the 2013 Dinner of Champions.

MuckFest MS: BaltimoreSaturday, June 29, 2013

Trail-Way Speedway100 Speedway LaneHanover, PA 17331

8 JOIN THE MOVEMENT: nationalMSsociety.org

Bike MS: Bike to Bordeaux is held at Linganore Winecellars in beautiful Mt. Airy, MD. Participants will enjoy a ride with beautiful scenic views ended by a complimentary wine tasting and lunch at Linganore Winecellars.

Cycle a variety of routes through the challenging and hilly countryside of Frederick and Carroll counties. Bike to Bordeaux is fully supported with rest stops stocked with snacks, ice-cold drinks and cheering volunteers. All along the routes you’ll find Support and Gear vehicles, professional medical volunteers and bike mechanics to keep you going to the finish line.

The sense of accomplishment you’ll feel as you cross the finish line can only be matched by the difference you’ll be making in the lives of everyone affected by MS. All participants agree to raise at least $150 to participate. The money you raise will fund research into the cause, cure and treatment of MS as well as funding education, advocacy and local programs that enhance the quality of life for people affected by MS.

Don’t Miss Bike MS: Bike to Bordeaux

September 28, 2013

bikeMSvineyard.org • 443-641-1200REGISTER TODAY!

11TOLL FREE NUMBER 1 800 344 4867

Your whole life changes when you learn you have multiple sclerosis; mine sure did. In my case, those changes weren’t largely physical. Rather, my diagnosis caused me to reconsider my place in the world and the way I interact with other people and institutions.

Like many others with MS, the process of learning to live with my condition opened my eyes to the necessity for me to become an advocate — for myself and, by extension, for others with MS. I suppose I was accustomed to the concept of advocacy before I was diagnosed. As a mother I advocated for my kids, seeking the best healthcare, education opportunities and play dates possible. Those of us with MS also have to learn to advocate for ourselves. We need to assert our own needs and effectively communicate them to our doctors, employers, insurers, even our families and friends. I have always been a bit reticent to ask others to do things for me. The National MS Society, recognizing that many people are in the same boat, offers helpful advice at www.nationalMSsociety.org/selfadvocacy for learning to take on the role of self-advocate in the key realms of our lives.

A recent legal settlement highlights the importance of self-advocacy for people with MS who are navigating the healthcare system. In the case of Jimmo vs. Sebelius (in which the Society was a plaintiff), a federal judge on January 24 approved a settlement that reaffirmed patients’ access to Medicare benefits, regardless of whether their condition improves as a result of the treatment provided.

For decades, Medicare beneficiaries, especially those with long-term or degenerating conditions and those who needed rehabilitation services, have been denied care on the grounds that those services didn’t result in improvements to their condition. For patients whose conditions remained stable or chronic, rehabilitative services were often deemed to be for “maintenance only,” and thus weren’t covered. The new settlement reinforces the original intent of the law — that it’s illegal for Medicare to deny coverage on that basis. The law requires the Centers for Medicare & Medicaid

Be Your Own Best Advocate By: Jennifer LaRue Huget

Services (CMS) to revise its Medicare Benefit Policy Manual and numerous other policies, guidelines and instructions to ensure that Medicare coverage is available for skilled maintenance services in home health, nursing home and outpatient settings. Here’s where self-advocacy kicks in. The new policy is already in force. People with MS don’t have to wait until the CMS revises its documents to gain coverage for the care they need. People who are denied Medicare for skilled maintenance nursing or therapy because they are “not improving” can appeal those decisions right away. That’s a very important form of self-advocacy. To that end, another of the plaintiffs in the settlement, the Center for Medicare Advocacy, offers self-help materials at www.medicareadvocacy.org/take-action/self-help-packetsfor-medicare-appeals to help people understand coverage rules and learn how to contest Medicare denials for outpatient, home health or skilled nursing facility care.

It’s important to bear in mind that the settlement doesn’t guarantee coverage; providers and people seeking Medicare coverage for treatments still have to demonstrate that the care is medically reasonable and necessary. Still, eliminating the standard that required patients to show improvement in their condition, not just maintenance, is a big step in the right direction.

The term “self-advocacy” can sound kind of daunting; when I first heard it, I thought it meant going to Washington, D.C., to lobby for funds for MS research. I have since learned that, yes, lobbying is at one end of the self-advocacy spectrum, but at the other end of that spectrum there are many everyday opportunities for self-advocacy. Making sure you’re getting the medical attention you need? That’s self-advocacy. Reminding others that you can still do your job well, despite any limitations your MS places on you? That’s self-advocacy. At the most basic level, though, self-advocacy begins with becoming informed. As I said at the start, self-advocacy doesn’t come naturally to me. But I can read and learn and discuss issues related to MS. Armed with information, I can advocate for myself with the best of ‘em.

Care partners — through support, guidance and compassion — illuminate the lives of people with multiple sclerosis.

Nominate a spouse, partner, child, parent, friend or anyone who goes above and beyond in supporting you, or someone you know, while living with MS, for the third annual Care Partner of the Year Luminary Award.

To nominate a care partner please go to our website, www.nmss-md.org and complete the online form describing why your care partner deserves the award

and what brings them joy. The deadline for submissions is August 31.

Care Partner of the Year Luminary Award

The Maryland Chapter is pleased to announce that the 2013 Research Symposium and Volunteer Awards will be held the evening of Monday, October 21, 2013 at Martin’s West. MS experts Peter Calabresi, M.D. of the Johns Hopkins MS Center, Walter Royal, III, M.D. of the Maryland MS Center. Dr. Ellen Mowrey from the John’s Hopkins MS Center and Dr. Robert Shin from the University of Maryland will share their expertise in an open panel discussion.

In addition to the research symposium, the evening will include the election of the FY2014 Chapter Board of Trustees and the presentation of the 2013 Ed Duggan Community Champion Awards. The Ed Duggan Community Champion Awards recognize individuals that are moving the mission of the National MS Society forward. Nominations are accepted in the following categories: Excellence in Mission Advancement, Event Volunteer, Healthcare Professional and Corporate Partner. A description and criteria is available for each on the application included in this newsletter. Please nominate those deserving individuals so that we may recognize them for their contributions to moving us closer to a world free of MS.

2013 Research Symposium and Volunteer Awards

10 JOIN THE MOVEMENT: nationalMSsociety.org

The donation of your car, truck, motorcycle or trailer can be used to help fund critical research for multiple sclerosis. We make donating your vehicle simple. To begin the process or learn more, visit us at www.AUTO4MS.org or call our office at 1-877-672-8864.

Key Points

Unlike other auto donor programs, the National MS Society, Maryland Chapter 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. The National MS Society is a non-profit, 501 (c) (3) corporation, so your donation is tax deductible to the extent allowable by law. Please refer to your tax professional for specific details.

We can accept a vehicle in any condition from

Help Drive MS Away by Donating Your Vehicle Today

Central Maryland and the Eastern Shore, even cars that don’t run. If you live in Western Maryland, we may still be able to accept your donation.

Please visit www.AUTOS4MS.org or call 1-877-672-8864 for more information.

Starting the Process

• Call our toll free number 1-877-672-8864 or submit the electronic donation form found online at www.AUTOS4MS.org.

• Have your title in hand when you call so we can get specific information about the vehicle.

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

• Once we receive the copy of your title, your donation will be processed.

• 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.

13TOLL FREE NUMBER 1 800 344 4867

TribuTes & MeMorials

From January 2013 - March 2013, gifts were made to the National MS Society, Maryland Chapter in honor of:

Gail Fischbach

Irene Geller

Steve & Amy Johnson

Nicole Kaltreider

From January 2013 - March 2013, gifts were made to the National MS Society, Maryland Chapter in memory of:

Sally Bosley

Mary Brennan

Maureen Duke

Harry Grunwell

Cheryl Lynn Gawlas-Hartman

Diane Thomas-Kefauver

Giovina Marie Landis

Tributes & Memorials are a thoughtful and convenient way for you to acknowledge someone important to you while supporting the work of the Society. To make a contribution, please send your donation to the Chapter or visit us online at www.nmss-md.org. We will notify the honoree or family member you designate.

Hughette McKay

Patrick O’Neill

Kellie Reardon

Dr. & Mrs. Rosen

Asrael Ruddie

Cynthia Duval Shelby

Jack Lessick

Jeanne Logan

Karen Marella

Stacy Edward Markland

Howard Neiswonger

Paul Orr

William Richardson

Dr. Robert Schmukler

Rebecca Shogars

Betty Stolka

Carroll Street

Gerald Wilson, Sr.

TRIBUTES

MS shouldn’t stand in the way of an education, which is why the National MS Society’s scholarship program exists — to help highly qualified students who have been diagnosed with MS or who have a parent with MS achieve their dreams of going to college.

The Maryland Chapter is proud to be able to award $1,500 to Paul Burke, whose mother has multiple sclerosis.

“I thank you very much for the exceptionally generous college scholarship that you awarded me,” Burke says. “I am incredibly honored and appreciative of this gift. As some of you may know, having a family member with multiple can be challenging. My mom really works hard to not let her disabilities get in the way of our family. It makes me feel good that through your kindness and generosity, I am able to help with my tuition by earning a scholarship. I hope that I will earn your

continued respect as I continue to excel in school.”

Paul is on his way to the University of Virginia to study aerospace engineering.

Maryland Chapter 2013 Scholarship Winner Announced

The U.S. Food and Drug Administration has approved Tecfidera™ capsules (dimethyl fumarate, Biogen Idec –formerly “BG-12”) as a first-line disease-modifying therapy for people with relapsing forms of MS. This makes the third oral therapy approved for relapsing MS and the tenth disease-modifying treatment available in the U.S.

“The approval of Tecfidera is an important expansion of therapeutic options, and increases our ability to find effective and tolerable treatment solutions for individual patients,” says Bruce A. Cohen, MD, Professor, Davee Department of Neurology and Clinical Neurosciences at Northwestern University’s Feinberg School of Medicine and Chair of the National MS Society’s National Medical Advisory Committee. “As with all newly-approved treatments, we will learn more about the benefits and safety of Tecfidera over time.”

“The approval of Tecfidera is encouraging news for people who have relapsing forms of MS,” notes Timothy Coetzee, PhD, Chief Research Officer at the National MS Society. “Having ten disease-modifying therapies available for relapsing forms of MS further motivates us to gather the forces of the global community to make similar strides for people with progressive forms of MS, for whom there are fewer options.”

New Oral Therapy for MS Now Available

12 JOIN THE MOVEMENT: nationalMSsociety.org

TOLL FREE NUMBER 1 800 344 4867 15814 JOIN THE MOVEMENT: nationalMSsociety.org

HEL

P &

SU

PPO

RT

Self Help Group/Physical Wellness Meetings

Maryland Athletic ClubReduced membership for people living with MS110 West Timonium RoadTimonium, MD 21093Call for more details: Ann Shaw at (410) 453-9111

Towson Yoga; The Newman Center10:30 a.m. - 11:30 a.m.5828 York RoadTowson, MD 21252Call Robert for more details: (410) 828-0622

Columbia Gym6151 Daylong LaneClarksville, MD 21029Call Vicki Burns for more details: (410) 730-6744

Severna Park Aquatics; Spy AquaticsSaturdays 10:30 a.m. - 11:30 a.m.623 Baltimore Annapolis BoulevardSeverna Park, MD 21146Call Maureen for more details: (410) 315-7779

Westminster Daytime GroupSecond Monday, 10:00 a.m.Donna: (410) 875-4173

Harford CountyJoppa - Multiple Sclerosis Faith Based Support GroupSecond Monday, 6:30 p.m.Kim: (443) 807-8914

Howard CountyColumbia - Mildly Affected andSupportive Partners GroupThird Wednesday, 7:00 p.m.Ed/Evelyn: (410) 715-1325

Washington CountyHagerstownThird Tuesday, 7:00 p.m.Debbie: (301) 797-3793Carole: (301) 393-8589

Pikesville/Owings Mills Third Wednesday, 10:00 a.m. Cheryl: (410) 581-0332 Pain Connection Support Group Second Thursday 1:00 p.m. - 2:30 p.m. Linda: (410) 533-2999 or (410) 672-0030 No cost to attend. Perry Hall/Supportive Partners Group First Tuesday, 7:30 p.m. Ken: (410) 391-939 Frederick An MS Foundation Sponsored Group First Monday, 6:30 p.m. Deann: (301) 293-6080

To become a Self-Help Group Leader please call 443-641-1200.

Physical Wellness Centers:For referrals to fitness facilities and instructors in your areas, please call 1-800-344-4867.

Kent Island Third Wednesday, 4:00 p.m. Michelle: (410) 282-6990 Salisbury MS Lunch Group Third Thursday, 12:00 p.m. Barb: (410) 835-2229 Edgewater First Monday, 7:00 p.m. Bob: (410) 693-9302 Staying Well with MS A group for Veterans with multiple sclerosis 2nd Monday of every month from 1:00 p.m. - 2:30 p.m. Baltimore VAMHCS Contacts: Maggie Kazmierski at 410-605-7000, ext. 6095 or email margaret.kazmierski@va.gov Lisa Mitchell at 410-605-7000, ext. 4372 or email lisa.mitchell2@va.gov

These groups are not affiliated with the National MS Society, but could be helpful to members:

Join the Conversation!

facebook.com/MSMaryland

@MS_Maryland

Connect with us online to stay informed about the latest research updates, news

and events in your area.

Baltimore CityBaltimore - All Together GroupSecond Saturday, 10:30 a.m.Dana: (410) 644-0822Isabelle: (410) 358-5267

Baltimore CountyCatonsville – Weathering the StormsSecond Saturday, 10:00 A.M.Lyn: (410) 747-6540

Perry HallThird Thursday, 11:00 a.m.Cathy: (410) 913-7925

Parkville/Perry Hall - Mildly Affected GroupSecond Tuesday, 7:00 p.m.Diane: (443) 567-6400Julie: (410) 256-7880

Carroll CountyWestminster Evening GroupFourth Tuesday, 7:00 p.m.Dawn: (410) 756-1033Joan: (410) 848-8658

Pasadena Second Monday, 5:30 p.m. Laura: (410) 948-9817

pinterest.com/NMSSmaryland