Fall 2014 MSConnection

FALL 2014CENTRAL & EASTERN VIRGINIA CHAPTER

MS CONNECTION NEWSLETTER

INSIDETHISISSUE

05MOVEMENT AMBASSADOR TRAININGS

08TELELEARNING

14MANAGING MS SYMPTOMS ON THE JOB

17FOCUSING ON PROGRESSIVE MS

BIKE MS: RIDE VIRGINIA PAGE 06

ANNUAL MEMBERSHIP MEETING PAGE 04

02 MS CONNECTION: FALL 2014

CHAPTER NEWS

LETTER FROM THE PRESIDENTDear Friends,

Given the dynamics of our first year in our new chapter territory, we benefit by reflecting on our performance in fiscal year 2014 and plan how we will make an impact in the coming fiscal year.Our board and staff stops to reflect on the strategies that position the National MS Society to be a successful with funding MS research and providing direct financial assistance to those living with MS. The question often comes down to whether we are talking about high performance or high impact.Our theme this year is Fueling Impact. High-impact is something you journey toward. As a rule this is something you cannot achieve

instantaneously. As we deliver great programs, exceptional events, and further MS research consistently it is in the consistent performance over time that creates impact.The Society is supported by a strategic plan, an active board, committed staff and loyal participants and volunteers aiming to fuel impact.I invite you to our Annual Membership Meeting, the evening of Thursday, November 13th at the Omni Richmond Hotel, and join us on the journey to fuel impact across Central and Eastern Virginia.The best is yet to come,

Sherri EllisChapter President

03NATIONALMSSOCIETY.ORG | 1-800-344-4867

NATIONAL MULTIPLE SCLEROSIS SOCIETYCENTRAL & EASTERN VIRGINIA CHAPTERRichmond Office:4200 Innslake Drive, Suite 301Glen Allen, VA 23060Virginia Beach Office:760 Lynnhaven Parkway, Suite 201Virginia Beach, VA 234521-800-344-4867 • www.MSVirginia.orgChairman: Frank N. CowanChapter President: Sherri EllisDesign: Robyn M. Hirsch

© 2014 National Multiple Sclerosis Society, Central & Eastern Virginia Chapter

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 MS 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 or contents of any product or service mentioned.

CHAPTER NEWS

MS AWARENESS WEEK—MARCH 2-8, 2015Every year the National MS Society uses one week in March to host awareness activities. This coming year is no different and the chapter is looking forward to partnering with you to help create more connections, deepen engagement, and increase impact across the MS Movement!

FUN WAYS TO RAISE AWARNESS:• Plan to wear orange the entire week and share with folks why• Organize a “Wear Orange” day at your work or school and have participants make a donation• Conduct a Facebook campaign asking your friends to dedicate their status and/or profile picture • Plan on sending out “orange” emails and include an MS Awareness Week tagline• Write or visit your legislators and share how MS has touched your life• Or think of your own creative MS Awareness activity (Don’t forget to share it with us on Facebook!)

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

Do you have great ideas to increase awareness in your community? Want to get involved? Contact Jessica Ramirez at 804-591-3038 or [email protected].

04 MS CONNECTION: FALL 201404 MS CONNECTION: SUMMER 201404 MS CONNECTION: FALL 2013

ANNUAL MEMBERSHIP MEETING THURSDAY, NOVEMBER 13, 2014We invite you to join us for our Annual Membership Meeting! The evening will begin with a social and cash bar. Then we will move into our Annual Meeting where we will elect the 2015 Board of Trustees, hear a wonderful keynote presentation on the latest in MS Research, and applaud the efforts of our wonderful volunteers and fundraisers.

KEYNOTE PRESENTATION: MS RESEARCHResearchers are working tirelessly to discover new ways to treat MS and ultimately stop, repair and end the disease forever. This year’s presentation will focus on the latest in cutting edge research and what’s in the pipeline.

AS A MEMBER OF THE CHAPTER, WE ENCOURAGE YOU TO ATTEND AS WE CELEBRATE PAST SUCCESSES AND LOOK FORWARD TO ANOTHER YEAR OF EXCELLENT PROGRAMS, SERVICES, AND FUNDRAISING ACTIVITIES.

DETAILS:Omni Richmond Hotel 100 South 12th Street, Richmond, VA 232195:45 pm: Social, Light Hors D’oeuvres, and Cash Bar6:30 pm-7:30 pm: Annual MeetingJames Center Parking Deck $3.50 flat rate after 4:30 pmShockoe Parking Deck: $2.00 This program is free; however, RSVP is required by November 5th! To register, contact the chapter at 804-353-5008, option 2, or visit www.MSVirginia.org.

If you are interested in serving on the Board, or would like to propose an individual for consideration, please submit a letter of interest and resume to [email protected].

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WAYS TO GIVE

GIVE AT THE OFFICEEvery year, people nationwide help create a world free of MS by contributing through their employer’s charitable giving campaign. Most campaigns kick off in the fall, so if you’ve been looking for an easy and efficient way to join the movement, act now. Simply designate your annual pledge to the National MS Society. Your donation will be automatically deducted from each paycheck to fund cutting-edge research and provide local programs and services to help those affected by MS move their lives forward.

HOW TO DESIGNATE THE CHAPTEROur numbers are changing; therefore, please reference your workplace giving listing for the exact code and number—look for National Multiple Sclerosis Society, Central & Eastern Virginia Chapter.

If your employer doesn’t off er a giving program, talk to your benefi ts administrator or call us at 1-800-344-4867, option 2, to see if we can help.

PROGRAMS

MOVEMENT AMBASSADORSEducating and engaging thousands of people in the movement to end MS is a big job and we can’t do it alone. That’s why we are recruiting volunteers for our Movement Ambassador Program. The primary role of Movement Ambassadors is to engage others. Movement Ambassadors can do a wide range of awareness activities from simply talking to someone about your involvement with the National MS Society to manning information tables at local health fairs and providing presentations to community groups. Simply put, Movement Ambassadors act as an army of people spreading awareness about MS and the National MS Society in our local community.

UPCOMING TRAININGSTuesday, September 23 from 6:30-8:00 pmVirginia Beach Office760 Lynnhaven Parkway, Ste. 201Virginia Beach, VA 23452 Thursday, September 25 from 6:30-8:00 pmRichmond Office4200 Innslake Drive, Ste. 301Glen Allen, VA 23060RSVP required by Friday, September 19th.

For more information or to RSVP, please contact Robyn Hirsch 757-319-4252 or [email protected].

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EVENTS

NEW DATES-SAME GREAT BIKE MS: RIDE VIRGINIA PRESENTED BY THE PAGE AUTO GROUPThe change in dates for Bike MS: Ride Virginia did not slow down the cyclists or the fundraising for the Chapter’s 2nd Bike MS event this year! It was another amazing weekend on the country roads of Virginia from Richmond to Williamsburg. As we reflect on the miles behind us and smile at the memories from a beautiful weekend, we want to thank the 300 cyclists and 150 volunteers who took to the roads for Ride Virginia on September 6 & 7. Through their amazing efforts, this 2014 Bike MS has raised $340,000 to date. We are hoping to surpass our 2013 total of $396,000 by the fundraising deadline, October 17, 2014. Let’s keep pedaling toward that goal together and finish 2014 strong!

TOP TEAMS:1. Capital Ale House–John Polk: $37,5412. Team MCV–Jalana McCasland & Jo Gable: $28,6103. B & R Road Warriors–Darma Bennett-Hull : $25,9914. Williams Mullen–Jane Chambers: $18,7085. Chesterfield Team 911–John Jones: $15,220

TOP INDIVIDUALS:1. Mike Hull - $11,660 2. Darma Bennett-Hull - $9,5113. Matthew Cheek - $5,2954. Jamey Davidson - $4,750 5. Eric Lee - $4,250

The success of Bike MS comes from the dedication of the cyclists, volunteers, and sponsors who believe they can help create a world free of MS. Many thanks to the Bike MS 2014 sponsors:

We also could not do it without our Bike Shop Sponsors who provided bike mechanics along the route for the weekend of the ride. Thank you to Agee’s Bicycles, Conte’s Bike Shop, Performance Bicycles, Old Towne Bicycles, Pedal Power, Bing Bicycle, and Cycle Ed.

REGISTER NOW FOR 2015—FOR THE LOWEST REGISTRATION RATE OF THE YEARFrom now until November 1, registration for 2015 is $20. On November 2, registration will go up to $25. The 2015 website is not open yet. Please contact Karla McCarraher to register for Bike MS 2015 at 757-319-4253 or [email protected].

CowanGates

Miles of Scarves

Michael Melnyk Memorial


EVENTS

2014 BIKE MS: VIRGINIA’S OCEAN TO BAY RIDEAnother Bike MS: Virginia’s Ocean to Bay Ride is in the books! Thank you so much to all the cyclists, volunteers and sponsors who made this event a huge success by raising an amazing $459,000. Planning has already started for our milestone 35th Bike MS. This will be one to remember!

TOP INDIVIDUALS:1. Ron Brodsky - $26,9602. Jeff Kerr - $17,8123. Glen Pierce - $13,2004. Mark Smith - $7,9255. Soozi McLain - $7,083

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.

TOP TEAMS:1. Pedalin’ with GP–Glen Pierce: $52,1832. TBA CLAMS–Joe & Polly Frease: $50,4553. Sprocket Protectors–Joe Bushey: $30,9964. Team Munden–Ron Brodsky: $29,7605. “Heroes Live Forever”–Jeff Kerr: $26,423

REGISTER NOW FOR 2015Registration is $25 plus accommodations. The 2015 website is not open yet. Please contact Karla McCarraher at 757-319-4253 or [email protected] to register for 2015 Bike MS.


PROGRAMS

TELELEARNINGConnect to the information you need–information and guidance on current matters essential to living one’s best life with MS. The program offers different topics annually. Each free telelearning will feature topic-area expert(s) by phone with online presentations and a Q&A session.

SCHEDULE AND TOPICSTips for People with MS and Their Partners – Planning for the FutureTuesday, November 18, 2014 - 5 pm • Thursday, November 20, 2014- 10 pmLearn about the legal and financial considerations critical for partners and people living with MS. This session will be presented by Dick Bell of Financial Education Partners Foundation and Bradley Frigon of the National Academy of Elder Law Attorneys.

MS Research – Your Questions AnsweredTuesday, January 20, 2015 - 7 pm • Thursday, January 22, 2015- 10 pmExplore current work being done by the Progressive MS Alliance Initiative and the Wellness Work Group with Bruce Bebo, Associate Vice President of Research, National MS Society and Doug Landsman, Senior Director of International Research Programs, National MS Society.

MS and Employment (Four Part Series)

Legal Basics: Know Your RightsThursday, February 12, 2015- 8 pm Learn about your rights under the Americans with Disabilities Act (ADA) including disclosure. Job Accommodation Network Principal Consultant, Linda Batiste and Client Assistance Program attorney Jamie Ray-Leonetti will discuss practical ways to be proactive in your work situation and what to do if things do not go as planned. Also, hear from an individual with MS about their experience utilizing their rights in the workplace.

Managing Cognitive Symptoms and Fatigue in the WorkplaceThursday, February 26, 2015- 8 pmCognitive dysfunction and fatigue are two of the most common symptoms impacting people with MS in the workplace. They can pose significant challenges to maintaining employment. Neuropsychologist, Dr. Cynthia Sullivan, and occupational therapist, Tracy Carrasco, will discuss how these symptoms may present themselves and will share practical ways to manage them on the job.


09NATIONALMSSOCIETY.ORG | 1-800-344-4867 909Supports to Help You Find EmploymentThursday, March 12, 2015- 8 pmEmployment resources vary depending on the level of impact your MS has upon your ability to work. Samantha Mankin, Rehabilitation Supervisor with the Division of Vocational Rehabilitation, Russell Bowe of the Speer Adult Workforce Center, and Amira Fahmy of Getting Hired Inc. will discuss how to use their resources to find employment opportunities appropriate to your needs.

The Essential Guide to Flexible and Home-Based JobsThursday, March 26, 2015- 8 pm ETWhat are the latest trends in the work-from-home and flexible job market? Brie Reynolds from Flexjobs.com, will walk participants through the trends, top career fields and most common jobs available, who’s hiring, and how to find these flexible opportunities. Learn how to avoid common job scams and tips for successful job applications.

Managing MS Bladder and Bowel SymptomsTuesday, March 17, 2015- 7 pm • Thursday, March 19, 2015- 10 pm Learn strategies for managing bowel and bladder symptoms in MS with Pat Kennedy, RN, CNP, MSCN, Can Do Multiple Sclerosis and Dr. Marlene Murphy Setzko of the Mandell MS Center.

Sex Ed for Grownups – Intimacy in MSTuesday, May 19, 2015- 7 pm • Thursday, May 21, 2015- 10 pmMS can certainly change a romantic relationship – learn from Dr. Timothy Hlavinka, Urology San Antonio and Dr. Linda Mona, VA Long Beach how to maintain or build intimacy with MS is in the picture.

Gender Differences in MSTuesday, July 21, 2015- 7 pm • Thursday, July 23, 2015- 10 pm Men and women are affected by MS differently – join Dr. Barbara Giesser and Dr. Rhonda Voskuhl of UCLA, to learn why and how those differences are important.

Preparing for MS Doctor VisitsTuesday, September 15, 2015- 7 pm • Thursday, September 17, 2015- 10 pmLearn tips to prepare for successful visits with your doctor. Kathy Costello, MSCN, Associate Vice President of Clinical Care, National MS Society shares ideas on how to build a true partnership with your provider.

* Presenters are subject to change.

REGISTER NOW BY CALLING 1-800-344-4867 OR REGISTER ONLINE AT WWW.NATIONALMSSOCIETY.ORG/TELELEARNING.



DIY OPPORTUNITY

A FUNDRAISER THAT LASTS FOR GENERATIONS After Tammy Ouellette lost her job due to her MS, she realized finding work was a difficult task. So, since her and a couple of her friends shared two very strong passions–design and helping others–she had an idea to start a business. Tammy approached her friends and after much discussion, market research, and planning, Heart Filled Keepsakes and Keepsakes Fundraiser were born. The trio thought what better way to design and help people than creating a fundraising program! And, it’s not your typical fundraiser. The Keepsakes they offer and design, such as framed photo boards, memory albums, and pictorial videos, become family heirlooms.

ABOUT THE KEEPSAKES FUNDRAISER PROGRAMEveryone is so busy with family, work, extracurricular activities that there’s hardly time to but fundraising is such an important part of many organizations that we are involved in and/or show our support. That’s why our Keepsakes Fundraising has worked hard for you to make fundraising as profitable and effortless as possible, here’s why: they train you, they supply everything you need, they do all the follow-up with your contributor once they purchase any Keepsake, they collect the payment via check or credit card, and they deliver the Keepsakes to the contributor.A specialized National MS Society DIY Keepsakes Fundraising website with a fundraising kit and handbook have been created to help you get started today. Visit www.heartfilledkeepsakes.com/ms-society-diy-fundraiser.html to learn more.

SPECIAL THANKS TO THOSE WHO ORGANIZED RECENT DO IT YOURSELF FUNDRAISERS TO BENEFIT THE CENTRAL & EASTERN VIRGINIA CHAPTER:• Charity Book Sale hosted by Book Exchange and Movie & Music Exchange: $1,005• Bertucci’s of Short Pump—Dining for Dollars July Days: $140

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WAYS TO GIVE

THE POWER OF A WILL Support for our mission, income for you, a secure future for your family, whatever goal – there’s a gift to fit your needs.There are many ways to support the National Multiple Sclerosis Society and take care of you and your loves ones at the same time. Your gift can take multiple forms and can help you address your personal financial goals. You can make a gift that costs you nothing during your lifetime through your will, fund a gift annuity that will pay you for the rest of your life, or gift an asset you no longer need or want.Bequest gifts from your will or trust give to the National Multiple Sclerosis Society without affecting your cash flow during your lifetimeGifts of retirement plan assets to the Society upon death generate no income taxes. The Society is tax-exempt and eligible to receive the full amount and bypass any income taxes. Gifts of life insurance are a popular method of providing much-needed funds to a beneficiary such as the National Multiple Sclerosis Society at your death. Life insurance proceeds are almost always income tax–free to the beneficiary. Charitable gift annuity returns payments to you. Your gift to the National Multiple Sclerosis Society goes into an account that pays income to you and/or other beneficiaries for life. When there are no remaining beneficiaries, the balance in the gift account is paid to the Society for the purposes that you specified when you set up the gift.

PROGRAMS

FINANCIAL ASSISTANCE The chapter provides short-term, limited, and reasonable financial assistance to address the specific challenges that living with MS can cause.

CATEGORIES:• Emergency Assistance• Independent Living Needs• Home & Vehicle Modifications• Mental Health Needs• Physical Health Needs• Wellness Programs• Durable Medical Equipment/

Assistive Technology

To learn more contact the chapter at 804-353-5008 option 2.

WE ARE DEDICATED TO REACHING OUT TO INDIVIDUALS AND FAMILIES LIVING WITH MS AND TO MEETING THEM AT THEIR POINT OF NEED.

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Some of my fondest memories involve the many tennis matches I played with my dad. I don’t remember the details of every match, but there is one I will never forget.I was quite young, but old enough to be a formidable opponent. All of a sudden, in the middle of our match, my dad began playing horribly. I initially

assumed he was just going easy on me, but he only got worse. He asked if we could take a break. On the bench, he told me he felt extremely dizzy and had no idea why.A couple of years later, I remember finding some MRI images on the kitchen counter and having no idea what they were. Eventually, my dad told me he had MS. I was very worried, but he assured me everything would be fine. Nevertheless, the news changed me profoundly. I tried to learn as much as possible about MS, and along the way, I developed a strong interest in science, specifically neuroscience. I took this passion to the next level when I worked as a research assistant in the

Department of Medicinal Chemistry at Virginia Commonwealth University. Whenever I had free time, I researched MS, whether by perusing scientific journals or discussing it over lunch with a neuroscience professor. Recently, my girlfriend and I opened a café where we donate all of our profits to charity. We have already raised $1,200 for the National MS Society. I am amazed at how much support we have received from our community. Learning about science and operating my café have been, by far, my most rewarding high school activities. But I wouldn’t have experienced them if my dad had never been diagnosed with MS. Of course, he has faced many obstacles because of his disease and I have encountered hardships as well, but I like to look at the glass as half full. MS stays with me wherever I go, but it is a motivating force behind my endeavors, which will stick with me for the rest of my life.

Luke Mainwaring is a 2014 National MS Society Mike Dugan Scholar from Deep Run High School in Glen Allen, Virginia. Th is year, Luke is majoring in neuroscience at the University of Pennsylvania. To learn more about supporting or applying for Society scholarships, visit www.nationalMSsociety.org/scholarship, or call 1-800-344-4867.

WAYS TO GIVE

THE HALF-FULL GLASSBY LUKE MAINWARING

2014 NATIONAL MS SOCIETY MIKE DUGAN SCHOLAR, LUKE MAINWARING


CHAPTER NEWS

SCHOLARSHIP PROGRAM OPENS The National MS Society awards scholarships to highly qualified applicants who have been diagnosed with MS or have a parent/guardian living with the disease and demonstrate financial need, a strong academic record, leadership, community involvement, and how MS has impacted their lives. Awards range from $1,000–$3,000 and are awarded to applicants who will be or are attending an accredited postsecondary school and enrolled in at least six credit hours per semester in course work leading to a degree, license, or certificate. Applications are accepted between October 1, 2014 and January 15, 2013. Apply online at www.nationalMSsociety.org/scholarship. Note only completed online applications will be accepted.

Th e National MS Society Scholarship program is supported by funders like you! Did you know you or your company can sponsor a 2015 scholarship and help make a diff erence in a family’s life? Contact [email protected] to learn how!

ADVERTISING OPPORTUNITIESHelp the Chapter share important information about research, programs, services and events by advertising in our Newsletter. You may sponsor the entire issue, or take out a full, 1/2 or 1/4 page ad....the opportunities are endless!Contact Robyn M. Hirsch at 757-319-4252 or [email protected] to learn more.



MS is a complex and unpredictable disease causing varying effects on a person’s ability to work. Experiencing new symptoms might make you question whether you can continue working and, when those symptoms diminish, you might wonder why you were worried about work at all.People living with MS often continue working long after their diagnosis. Other individuals with MS decide to leave their jobs when they are first diagnosed or experience their first major exacerbation, often at the suggestion of a loved one or their doctor. This decision is often made too hastily and at a time when symptoms can cloud their judgment. Disease-modifying therapies, new technologies, better symptom management, legal employment protections and community resources can help you make an informed decision about work and remain in the workforce longer.Because MS presents itself differently from person to person, day to day, and even hour to hour, it can be a challenge for some individuals to perform optimally at their jobs. That is why it is critical to get to know yourself and your limits. Practical tips for helping with this include keeping a symptom journal or marking on your calendar each day how you felt. This gives you the ability to go back and notice if there are any patterns, possibly identify triggers and make adaptations to help you perform

better. Symptoms of MS that may impact a person on the job can include fatigue, cognitive challenges, fine motor symptoms, vision problems, depression, balance issues, numbness and tingling, or heat sensitivity. Some general tips to help manage a variety of symptoms include knowing what is normal for you, learning how to adapt in different situations, controlling your environment to help conserve energy, rest and relaxation, exercising, keeping a positive attitude, and proper nutrition. Learning to manage your symptoms both in and out of work will help you be more successful on the job. Check in with your doctor on any suggestions and specific programs to meet your individual needs. Fatigue and cognitive problems, not physical disability, are the two most common symptoms that ultimately lead people with MS to leave the workforce. Fatigue is the most common symptom of MS occurring in about 90% of people. MS fatigue can greatly interfere with everyday activities including work. Fatigue can increase cognitive problems as well. It’s very important to learn ways to help manage your symptoms; in the workplace, this is done with accommodations. Learning to manage fatigue in the workplace is an ongoing process. Each person has to uncover strategies that help him or her. It’s a good idea

LIVING WITH MS

MANAGING MS SYMPTOMS ON THE JOB BY CHRISTINA L. FORSTER, MA, CRC


to work with your doctor and possibly an occupational therapist to learn ways to manage fatigue. Some common tips include:• Prioritizing tasks• Pacing yourself• Planning ahead • Scheduling breaks and rest times• Using assistive technology• Evaluating your workspace To optimize your treatment, work with your doctors to determine how your medications can impact fatigue or other symptoms.. Cognitive challenges can affect up to 60% of people with MS, and stress can have a negative impact on cognitive function. Cognitive challenges could include attention and concentration, short-term memory, information processing, executive function, decision making and ability to follow through on plans, perception, and verbal fluency. As with fatigue there are some strategies that can help you adapt at work and perform better. Some tips include:• Being more organized• Using memory aids such as a calendar• Reducing stress• Minimizing distractions• Taking notes to help with memory• Asking for written descriptions of tasksAgain, it’s important to take care of yourself out of work as well by getting enough sleep, employing relaxation techniques, exercising, and eating healthy. Always talk with your doctor about exercise and nutrition plans. Make sure to discuss your medications and any possible side effects that may impact your cognition.

There are many other symptoms individuals with MS may experience at work. For more information, we highly encourage you to utilize the National MS Society’s resources, including publications on specific symptoms, online videos on symptom management, and the You CAN! Series. You can access this information by calling 1-800-FIGHT-MS or visiting the National MS Society’s website, www.nationalMSsociety.org. Additionally, the Job Accommodation Network (JAN) is an excellent resource that provides information about job accommodations strategies for employers and employees. This is a free service sponsored by the U.S. Department of Labor. For more information visit www.askjan.org or call 1-800-526-7234.


Gloria Dady had envisioned spending the rest of her working life taking care of people. She never expected that, in her 50s, multiple sclerosis would force her to start drawing on her retirement nest egg. It was unsettling — until she reached out for help from the National MS Society.Through the Society’s partnership with the Society of Financial Service Professionals, people affected by MS can get free financial counseling from trained professionals through the Financial Education Partners (FEP) program. Doug Head, CLU, ChFC, a financial advisor with Edward Jones in Tukwila, Wash., is one such volunteer. Head helps people plan for a life with MS by talking about basic budgeting, different ways to save, how to maximize health insurance benefits and more. But he lends more than his number-crunching know-how. He and other FEP volunteers also offer hope that any financial challenge can be tackled with patience and planning. “Dealing with the challenges of MS often leaves people feeling that their finances have gotten away from them,” Head says. “The first thing I ask is, ‘What are your two or three major financial concerns?’ This helps us focus on what’s really important to them.”Dady appreciated talking to a finance professional who could explain everything clearly and compassionately. Head discussed strategies to lower her tax payments and keep her retirement savings intact, even as she drew

on it for income. Over the past four years, Head has offered free financial advice to more than 100 people who have been referred to him by the Society. “The people I’ve met are wonderful,” Head says. “I’ve been inspired by their journeys.”People living with MS can talk in person or over the phone with FEP volunteers about financial topics such as insurance analysis, retirement, estate planning and legal planning. To learn more, visit www.nationalMSsociety.org/financialplanning or call an MS Navigator at 1-800-344-4867.

Th is article was originally written by Liz Murtaugh Gillespie of Moore Ink. PR & Fundraising Communications and was published in the Spring 2014 issue of the Greater Northwest Chapter’s MSConnection.

MONEY MATTERS

MANAGING YOUR MONEY WITH MS

GLORIA DADY WITH HER GRANDCHILDREN


The achievements of Dr. Barry G.W. Arnason, the 2014 recipient of the Dystel Prize for Multiple Sclerosis Research, are many, and include such significant contributions as laying the groundwork for the development of immune-directed therapies and understanding how the different components of the immune system work in MS. However, some of his discoveries hold particular significance for people with progressive forms of MS.

UNDERSTANDING PROGRESSIVE MSMuch MS research has focused on the role of T cells, which are a specific type of white blood cell that somehow become turn on the central nervous system and produce damaging inflammation. However, “I don’t think T cells have much to do with progressive MS,” said Dr. Arnason. “I think the problem is activation within the central nervous system of microglial cells, and that activation is the key to potential treatments of progressive MS.” Dr. Arnason made these comments in the opening lecture at the Annual Meeting of the Consortium of MS Centers in San Diego, while emphasizing that MS research focus more on progressive MS.

Dr. Arnason’s research into progressive MS has also helped to uncover evidence that damage to the spinal cord leads to the increased activity of certain docking sites on immune cells,

suggesting a vicious cycle of immune changes, damage and increased immune activation. Along the way, he also contributed to the better understanding of other disorders such as Guillain-Barré syndrome and myasthenia gravis.

TRAINING THE FUTUREDr. Arnason is also planting the seeds for high-quality MS care in the future. His institution, the University of Chicago Medical Center, at which he is the James Nelson & Anna Louise Raymond Professor of Neurology, recently received an Institutional Clinician Training Award from the Society. These awards provide five years of funding to support the establishment of a world-class training program, thereby attracting the best MS clinicians over multiple years.

The Dystel Prize is awarded jointly by the National MS Society and the American Academy of Neurology. The award is made possible through a special fund established in 1994 by the late Society National Board member Oscar Dystel and his late wife Marion in honor of their son John Jay, an attorney whose promising career was cut short by progressive disability from MS. To learn more about Dr. Arnason and past Dystel recipients, visit www.nationalMSsociety.org/dystel.

RESEARCH

FOCUSING ON PROGRESSIVE MS


MEMORIAL & TRIBUTESThe Central & Eastern Virginia Chapter would like to sincerely thank the generous contributors who made memorial and tribute gifts in the months of June and July. The memory of a loved one, or the excitement of a special occasion, lives on through these thoughtful gifts.

MEMORIAL GIFTSJohn GruberJane KieserEugene Bryl McCarthy Jr.Sally AcreeKim AlbaneseCaroline AmosAnne BlandEssex BankRobert JohnsonNadine KatonaElizabeth LewisShepherd LewisSandra LongestWilliam Lowery IIIThomas Meade JrTracie MothersheadOld TimersPeggy NuckolsChristopher Pile

Suzanne RennoldsRiverland InsurersAnthony SgroiVirginia SlaughterShannon SpearsJoseph Spruill JrSt Margaret’s SchoolNancy TignorLouise VelletriDoris WadeByrd WaringSara WattsJames WoolfordW. WrightThomas Wyatt JrJanice RankinJoyce PloegerSuzanne PuryearDr. Jane SilverMelissa Silver

Catherine “Kay” SpaanMarshall SpaanCaroline Ruth WarrenSarah Lichtel

TRIBUTE GIFTSSara JarnaginDonald EdwardsDrake MooreBarbara Thayer

IF YOU WOULD LIKE TO MAKE A MEMORIAL OR TRIBUTE GIFT, PLEASE CONTACT THE CHAPTER AT 804-353-5008 OR VISIT MSVIRGINIA.ORG.


A SPECIAL THANK YOU TO THE PRESENTING SPONSOR OF THE 2014 RICHMOND WOMEN ON THE MOVE LUNCHEON:


When my wife Michele was diagnosed with multiple sclerosis in October 2006, we faced a steep learning curve about the disease. Once we realized that the diagnosis wasn’t a death sentence, we established a structure around treating her MS and accommodating her symptoms.

Michele and I have been married for 30 years. Not being a medical person or an especially warm and fuzzy type, I tried to find a way to provide support. I settled on using my experience as an activist to advocate on behalf of people with MS right here in Vermont as the co-chair of Burlington’s Committee on Accessibility and the chair of the Society’s government relations committee.

I changed my life in other ways, as well. For the past 10 years, I worked as a consultant for a series of projects. Since I am a few years older than Michelle, our long-term plan was for me to retire first, while she continued working for several more years. However, it became apparent that support, just like MS, takes many forms. As time passed, I handled more tasks of our day-to-day life, and we decided that I would retire earlier than we had planned in order to take over our household and financial responsibilities.

While this admittedly resulted in a hit to our income, it also freed both of us. I am no

longer on the road a lot, working late and spending large chunks of time on the phone and computer. Although I have a lot to do right here at home, it doesn’t have to be squeezed in around any clients’ needs. Meanwhile, Michele doesn’t have to struggle to find the energy and time to devote to the daily, essential tasks of our life. We would both prefer that MS wasn’t with us, but at least for now our quality of life has improved.

The future will certainly hold more changes, but our partnership will remain the most significant means for us to adjust to whatever happens.

Ralph Montefusco and Michele Patenaude live in Burlington, VT. Article provided by the Greater New England Chapter.

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ADVOCACY

THE MANY FORMS OF SUPPORTBY RALPH MONTEFUSCO

RALPH MONTEFUSCO AND MICHELE PATENAUDE


This August, the Central & Eastern Virginia Chapter partnered with the Central and Western Pennsylvania Chapters to host the fourth annual MS Kids Camp. Camp was held in the mountains of southwest Pennsylvania at Camp Jumonville where children ages seven to fifteen who have a parent or guardian living with MS were invited to attend camp. This year, 27 campers from Virginia attended the camp along with staff and volunteers.

While at camp, campers were able to talk about how MS affects their lives in a safe and understanding environment while dispelling myths and fears about the disease. Campers spent time with neurologist Dr. Troy Desai of Allegany General Hospital in Pittsburgh, PA who answered their questions about MS, as well as quizzed the campers on their current MS knowledge. Campers also discovered how similar their parents’ MS symptoms are and how they all have common issues they face at home that their peers may not normally face.

Outside of learning something new about MS, camp also provided a fun environment where the campers could be themselves and not worry about responsibilities they may normally have at home due to their parents’ disease. This year’s camp had the theme of “Superheroes” where campers had the opportunity to make superhero capes and wear their favorite superhero gear to the camp dance party. Also while at camp, campers were able to swim, hike, participate in team building activities, play sports, and dye-tie t-shirts.

The Chapter would like to give a big THANK YOU to the ziMS Foundation for providing funding for this program. We would also like to thank our volunteers for dedicating their time and energy to make sure our campers had a great time.

To ensure you receive info for MS Kids Camp 2015, contact Kathryn Zapach at [email protected] or 804-591-3039.

PROGRAMS

CHAPTER RETURNS TO MS KIDS CAMP


VOLUNTEER SPOTLIGHT

JANE SKRJAJANE SKRYJA MOVED TO CHESAPEAKE, VIRGINIA IN 2006. SHE HAS THREE AMAZING DAUGHTERS— PATRICIA IN MARYLAND; PAULA IN CHICAGO, IL; AND PEGGY IN CHESAPEAKE, VA. JANE BECAME CONNECTED TO THE SOCIETY BY FOLLOWING HER HUSBAND TO MANY EVENTS AND HAS SINCE VOLUNTEERED FOR MANY YEARS AT BIKE MS: VIRGINIA’S OCEAN TO BAY RIDE, SPEARHEADING THE INFORMATION AND MERCHANDISE AREA.

I worked as a teacher and a teacher’s assistant. I especially enjoyed working with the special needs students. When I moved to Chesapeake, Virginia, my daughter, (Peggy Neidig) introduced me to the National Multiple Sclerosis Society, Central & Eastern Virginia Chapter. I have volunteered at several events, but my favorite is the Bike MS: Virginia’s Ocean to Bay Ride! This was my fourth year volunteering, I am already planning for next year! My daughter Peggy is a dedicated captain and cyclist for the Virginia’s Ocean to Bay Ride EMD Serono/Fat Frogs Team.

ARE YOU INTERESTED IN VOLUNTEERING?Our Chapter truly appreciates all of our dedicated volunteers. Volunteers are essential to our success. If you have some time during the week, we are always looking for extra help in the office. For information on how you can help, please contact Deborah Richards at 804-591-3034 or [email protected].



COMMUNITY CALENDAR PROGRAMS IN THIS SECTION ARE NOT ORGANIZED BY THE NATIONAL MS SOCIETY. MULTIPLE SCLEROSIS EDUCATIONAL GROUPThe 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 MS patients, caregivers, and families.4th Tuesday of the Month at 5:30 pmNeurosciences Conference RoomRiverside Medical Office Building, 12200 Warwick Blvd., Newport News, VA 23601

Th e group is off ered by Riverside Center for Neurosciences and meets on an ongoing basis. For information call 757-875-7880.

CAN DO MULTIPLE SCLEROSIS WEBINARSJoin Can Do MS live from the convenience of your home, at no charge, for an in-depth discussion on topics relating to exercise, nutrition, communication, symptom management and total health. October 7, 2014: 8 – 9:15 p.m.: Navigating the Healthcare Maze with Your Healthcare TeamJoin this interactive webinar to understand how to communicate with your healthcare provider/s, how to make the most of your visit with your provider and some tips on healthcare compliance and adherence.November 11, 2014: 8 – 9:15 p.m.: It Takes Two to… CommunicateJoin an occupational therapist and a clinical psychologist who will share helpful tips for talking and listening in ways that will keep your communications healthy, respectful, and productive.

To register visit www.mscando.org/multiple-sclerosis-programs/webinar-series/register or call 800-367-3101 x1281.

THERAPY MATTERSA series focused on the diversity and impact of therapy for Neurological Disorders. All programs are held on select Wednesdays from 1pm to 2 pm at Our Lady of Perpetual Help (4560 Princess Anne Road, Virginia Beach, VA 23462).

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September 10: The Universe Between Our EarsSeptember 24: Physical Therapy for Movement DisordersOctober 8: Yoga Therapy

October 22: Speech & Swallowing TherapyNovember 5: Gadgets & Gizmos for Independent LivingNovember 19: Music Therapy

To RSVP for one or more sessions, please call 757-495-4211 or visit OurLadyPerpetualHelp.com.


SELF HELP GROUP LISTINGFOR MORE INFORMATION CONTACT 1-800-344-4867 UNLESS OTHERWISE NOTED.

CENTRAL VIRGINIAHanover GroupThird Thursday: 1:30-3 pmChurch of the Redeemer8275 Meadowbridge Rd.Mechanicsville, VA 23116Leader: Dana 804-746-7481

Petersburg Day GroupSecond Thursday: 10-11:30 amRiver View-201 Epps St., HopewellLeader: Melanie 804-526-9129

Petersburg Evening GroupThird Thursday: 6-8 pmSouthside Regional HospitalThird Floor ClassroomLeader: Quennette 434-246-6007, 804-731-9069

Smyelin MS Support Group (Chesterfield)Third Wednesday: 12-1 pmJohnston-Willis Hospital, Cofield Conference Room inside Thomas Johns Cancer HospitalLeader: Sheila 804-739-8488Sharon 804-794-7589

South Hill Empowerment GroupThird Wednesday: 5:30-7:30 pmCommunity Memorial Health Center125 Buena Vista CircleLeader: Starr 434-378-2031

Richmond Day GroupSecond Monday: 10:15-11:30 amTuckahoe YMCA 9211 Patterson Ave.Leader: Darlene 804-346-2040

Richmond Weekend Group(Formerly Richmond Evening Group)Second Saturday: 11:30 am-1 pmHealthSouth Classroom5700 Fitzhugh Ave.Leader: Lorenzo 804-921-9712

Richmond (VA Home)For those with advanced MSEvery Monday: 11 am1101 Hampton St.Leader: Judy 804-359-4093

Tappahannock Neurological SupportSecond Monday: 10:30 amBeale Baptist ChurchLeader: Sharon 804-580-7315 Joan 804-443-9226

The InvinciblesThird Tuesday: 7-8:30 pmHealthSouth Fredericksburg300 Park Hill DriveLeader: Belinda 540-373-4377

EASTERN VIRGINIAChesapeake Group Third Tuesday: 7 pmLifestyle Fitness Center at Chesapeake Regional Medical Center800 N. Battlefield Blvd., Chesapeake, VALeader: Margie 757-633-4593

Suffolk GroupThird Wednesday: 6:30-8 pmMagnolia United Methodist Church1764 Wilroy Road, Suffolk, VALeader: Willie Ann 757-539-0139

Southside Group (Call for full list of Dates & Locations)Fourth Wednesday: 3 – 4:30 pmMeyera E. Oberndorf Central Library4100 Virginia Beach Blvd., Va. Bch.Leader: Peter (757) 671-1971

Gloucester GroupFirst Wednesday: 10:30 am-12:30 pmRiverside Wellness and Fitness Center7516 Hospital Drive, Gloucester, VALeader: Tom (804) 694-5696Barbara (804) 695-9950

ADDITIONAL SUPPORT OPPORTUNITIESON THE PHONEMSFriends: Peer Telephone Support866-673-7436, 9 am–Midnight ET

CHAT ROOM & BOARDSMSWorld- www.msworld.org

ONLINE PEER CONNECTIONSMSConnection- www.msconnection.orgConnect with others on a discussion forum, join an online support group, or make a one on one peer connection via email (telephone support also available if needed).My Solutions- Facebook Support Group for Young Adults in their 20s & 30s in Chapter areaTo sign up, visit: http://bit.ly/MySolutionsMS or contact at Jessica 804-591-3038.

African American Inspirational GroupFirst Thursday: 11 amHampton Public Library936 Big Bethel Road, Hampton, VALeader: D’Andre (757) 660-3455 VeeGee (757) 696-2540

Peninsula Evening Group Second Thursday: 5:30 pmSentara Careplex Hospital (York River Entrance, Conf. Rm. C)3000 Coliseum Drive, Hampton, VALeader: Kendrick (757) 408-9751Diana (757) 358-0284

NationalMultiple SclerosisSocietyCentral & Eastern Virginia Chapter

4200 Innslake DriveSuite 301Glen Allen, VA 23060

CHAPTER STAFFChapter President–Sherri Ellis: 804-591-3030Vice President, Finance and Operations–Michelle Derr: 757-319-4251Associate, Customer Service & Data–Matt Gregory: 804-591-3041Associate, Revenue Accounting & Volunteer Engagement–

Deborah Richards: 804.591.3034Director, Programs & Services, Kathryn Zapach: 804-591-3039Manager, Programs & Services–Jessica Ramirez: 804-591-3038Director, Communications & Marketing–Robyn M. Hirsch: 757-319-4252Senior Director, Development–Sharhonda Woods: 757-319-4254Director, Development–Karla McCarraher: 757-319-4253Manager, Development–Clare Lorio: 804-591-3037Coordinator, Individual Giving & Leadership Events–

Bobby Holt: 757-216-1221Assistant, Development–Debbie Cole: 804-591-3043Senior Manager, Statewide Advocacy–Ashley Kenneth: 804-591-3048

WE MOBILIZE PEOPLE AND RESOURCES TO DRIVE RESEARCH FOR A CURE AND TO ADDRESS THE CHALLENGES OF EVERYONE AFFECTED BY MS.

Like Us: MSCentralEasternVA Find us on Twitter: @MSCentralVA

PICTURED ABOVE: KATHRYN ZAPACH

Fall 2014 MSConnection

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