Fall 2013 MSConnection-Central Virginia Chapter

FALL 2013CENTRAL VIRGINIA CHAPTER

MS CONNECTION NEWSLETTER

INSIDETHISISSUE

042013 ANNUAL MEETING & RESOURCE FAIR

10MAKING HEALTH INSURANCE CHOICES

12FOCUS ON MS RESEARCH

17BE A DIGITAL MS ACTIVIST

STAIR CLIMB MSPAGE 06

EXCITING NEWSPAGE 02

NationalMultiple SclerosisSocietyCentral & Eastern Virginia Chapter

02 MS CONNECTION: FALL 201302

CHAPTER NEWS

LETTER FROM THE PRESIDENTDear Friends,

The excitement continues as I share great news with you regarding the Central Virginia and Hampton Roads Chapters of the National MS Society. The two chapters are joining together to form a new chapter called the Central & Eastern Virginia Chapter. Your new chapter will now serve a total of 5,300 individuals with MS and their families.

I feel by combining the talents of our boards, staff and volunteers we can more effectively meet two goals: (1) to enhance programs, services, and advocacy opportunities for those living with MS, as well as their families; (2) to increase fundraising and streamline operations to reduce costs, so that more money can go towards research and stay local to fund our mission.

The new chapter will be official on October 1, 2013. We will have staff, volunteers and offices in Richmond and Virginia Beach. My promise is to continue to offer education, support, services, and advocacy to and for Central and Eastern Virginia residents and partner with local companies, volunteers, and organizations to ensure that fundraising activities like Bike MS and Walk MS are fruitful and grow.

Throughout the summer, the staff and board of both chapters worked closely together to discuss and plan for the wonderful opportunities that are in front of us. I am thrilled to tell you that our new chapter territory will host two bike rides (one in June on the Eastern Shore and one in September in the Richmond/Williamsburg area), six walks, three corporate luncheons, and one corporate black tie dinner. There will also be many opportunities to be involved in awareness activities, volunteer, and participate through education, support, and advocacy programs.

I am confident that the combined strengths of everyone who cares about MS in Central and Eastern Virginia will move us closer to the ultimate goal that we all share—a world free of MS.

The best is yet to come,

Sherri EllisChapter President

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

NATIONAL MULTIPLE SCLEROSIS SOCIETYCentral Virginia Chapter4200 Innslake Drive, Suite 301Glen Allen, VA 23060804-353-5008 or 1-800-344-4867www.moveVA.org

Chairman: Frank N. CowanChairman Elect: Matthew Austin

Chapter President: Sherri EllisDesign: Jessica Ramirez

© 2013 National Multiple Sclerosis Society, Central Virginia Chapter

www.facebook.com/MSCentralVA

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

OPPORTUNITIES TO MEET THE NEW STAFFCome meet the staff from the Virginia Beach Office and hear about what we have planned for 2014:

ANNUAL MEMBERSHIP MEETING & RESOURCE FAIRWEDNESDAY, OCTOBER 23, 20135:15 pm: Resource Fair & Cash Bar; 6:45 pm: Dinner and Presentation BeginAttending the Resource Fair and Social Only: Free; Attending Dinner: $15/personSee page 04 for more information.

GORDON BIERSCH TAPPING PARTY & SILENT AUCTIONWEDNESDAY, NOVEMBER 13 • 5:00-8:30 PMSee page 05 for more information.

STAIR CLIMB MSSATURDAY, NOVEMBER 16 See page 06-07 for more information.

04 MS CONNECTION: FALL 201304 MS CONNECTION: FALL 2013

ANNUAL MEMBERSHIP MEETING & RESOURCE FAIR WEDNESDAY, OCTOBER 23, 2013Please join us for our Annual Membership Meeting and Resource Fair! The evening will begin with a resource fair comprising of event sponsors and community organizations. Then we will move into our Annual Meeting where we will elect the 2014 Board of Trustees, hear a wonderful keynote presentation on the latest in MS Research, and applaud the efforts of the countless volunteers, fundraisers, and sponsors that have contributed generously to our mission.

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.

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].

THIS YEAR’S EVENT WILL BE A COLLABORATIVE CENTRAL VIRGINIA & HAMPTON ROADS CHAPTER ANNUAL MEMBERSHIP MEETING. WE ARE EXCITED TO HAVE EVERYONE TOGETHER AS WE CELEBRATE PAST SUCCESSES AND LOOK FORWARD TO ANOTHER YEAR OF EXCELLENT PROGRAMS, SERVICES, AND FUNDRAISING ACTIVITIES.

DETAILS:Westin VB Town Center (4535 Commerce St., Va. Bch., VA)5:15 pm: Resource Fair & Cash Bar; 6:45 pm: Dinner and Presentation BeginCost: $15/dinner (Credit card or check in advance; payment will not be accepted at the door); Scholarships are available upon request.

RSVP REQUIRED BY October 14th! Visit www.moveVA.org or call the chapter at 804-353-5008.

05NATIONALMSSOCIETY.ORG | 1-800-344-4867 05NATIONALMSSOCIETY.ORG | 1-800-344-4867

EVENTS

GORDON BIERSCH TAPPING PARTY & SILENT AUCTION WEDNESDAY, NOVEMBER 13

5:00-8:30 PMPlease join us for fun, food and great beer! Gordon Biersch Brewry Restaurant at Virginia Beach Town Center (222 Central Park Ave Virginia Beach, VA 23462) is tapping their seasonal Winterbock brew to benefit the National MS Society, Central & Eastern Virginia Chapter.

• $1 Winterbock beers starting at 6 pm (while keg lasts)

• Over 50 Silent Auction Items

• 50/50 Raffle drawings at 6, 7 & 8 pm

• Great Music

If you have an item such as a gift certifi cate, gift basket, travel, tickets or other new merchandise that you would like to donate, please contact Tiff any Epley at 804-591-3036 or tiff [email protected].

VOLUNTEER

MAKE A DIFFERENCE WHILE LEARNING NEW SKILLSBuild real-world skills while helping create a world free of MS. Th e Chapter is looking for qualifi ed full or part time college students to intern. Internships are available in a variety of fi elds. Academic credit/community service credit is available.

AVAILABLE INTERNSHIPS:• Business Administration/Finance

• Client Programs (Social Work)

• Communications/Public Relations

• Corporate Relations

• Special Events

• Volunteer Program Management

Contact Deborah Richards at 804-591-3034 or by email at [email protected] if you are interested in rounding out your education or if you know a student who may be interested.


EVENTS: STAIR CLIMB MS

SKIP THE ELEVATOR, TAKE THE STAIRS!16, 32, OR 64 FLOORS • AN UNBELIEVABLE VIEW • A WORLD FREE OF MS!

Escape to the beach on Saturday, November 16 and participate in the Hampton Roads Chapter’s 3rd Stair Climb MS event!

DO YOU HAVE WHAT IT TAKES TO MAKE IT TO THE TOP? Stair Climb MS is a unique event where participants climb 16, 32, or 64 floors to the top of the Oceanaire Resort Hotel at the Virginia Beach Oceanfront and experience an amazing view of the Virginia Beach skyline.

TEAM UP FOR MORE FUN! Forming a Stair Climb MS team is a great opportunity to share a fun experience with friends, family members, or co-workers--all while moving us closer to a world free of MS. Race against the clock and see who is the fastest on your team!

CLIMB IN COSTUME Put on your creativity hat and don a costume for your climb. Group, couple, and individual costume contest winners will receive prizes.

REGISTER & BEGIN FUNDRAISING As soon as you register, you’ll have access to our online tools, making fundraising easier and more convenient than ever! No minimum fundraising goal is required, but fundraising is encouraged.

Climb Category Flight Options Registration FeeNon-Competitive (Non-Timed) 16 Floors (1x Bottom to Top) $50

Competitive (Timed) 16, 32, or 64 Floors (1x, 2x, or 4x Bottom to Top) $65

FUNDRAISING LEVELS: (Reach one of these levels and receive a special prize!) Registration fee counts toward prize level.

$150-Kilimanjaro Level • $300-McKinley Level$500-K2 Level • $1,000-Everest Level & Thousandaire Club

Register today by calling Karla McCarrahaer at 757-319-4253 or visiting www.moveVA.org.

stairclimb


EVENTS: WOMEN ON THE MOVE LUNCHEON

WOMEN ON THE MOVEThe Central Virginia Chapter hosted its Women on the Move Luncheons in Kilmarnock, Richmond, and Fredericksburg from September 18th through September 20th. The Luncheons were attended by close to 500 individuals raising over $150,000 for multiple sclerosis research, as well as local programs and chapter services! Attendees were able to buy raffle tickets for a chance to win a $1,000 shoe party hosted by Saxon Shoes, a

Virginia Tech Hokies Football Prize Pack, or a 14kt Gold Bracelet from Vera’s Fine Jewelers and bid on a variety of silent auction items.

The keynote speaker at all three luncheons was David Osmond. David is the 4th son of Alan Osmond of the singing group the Osmond Brothers. Following family tradition, David starting performing as the lead singer with his brothers in The Osmond’s 2nd Generation at age four. David shared his story about the challenges of living with MS and inspired all with his powerful message of hope through his music. David acknowledges that he has MS, but MS does not have him.

The luncheons recognized the achievements of “Women on the Move” in all three communities. All of the honorees are truly inspirational as they work hard to move their communities forward in both business and community service.

Special thanks to our Event Committees, who made the event happen without a hitch.

Thank you, as well, to our Gold Sponsors: Bon Secours Richmond Health, Cowan Gates, Price Waterhouse Coopers, Saxon Shoe’s, and The Landmark Company.

Thank you to all of our table sponsors and attendees for making Women on the Move a GREAT SUCCESS!

CHAPTER STAFF WITH DAVID OSMOND, BOTTOM FRONT


NEWLY DIAGNOSED

THE FIRST THREE MONTHS BY KATIE JENNINGS

Incredibly, it’s been three months since I was diagnosed with multiple sclerosis. Time flies when you’re busy and confused. These months have been a whirlwind of appointments and reading and exploration. I would not presume to give advice to people who have years of MS under their belts. But I would like to share my perspective about the bad and the good of being newly diagnosed, beyond just the physical symptoms.

THESE MONTHS HAVE BEEN A WHIRLWIND OF APPOINTMENTS AND READING AND EXPLORATION.

THE BAD: I HAVE NO IDEA WHAT’S GOING ON.I’m a person who prefers specifics. I like plans. I like goals. I once ran a marathon largely because I printed out a schedule and refused to deviate from it for five months.

Since my diagnosis, I’ve spent a lot of time coming to terms with the fact that not everything is black and white. In January and February, I visited three different MS specialists, and each gave me a different diagnosis (relapsing-remitting, primary-progressive, and finally

progressive-relapsing). Each doctor – well-meaning and concerned – gave me a completely different sense of what the coming years may have in store. Maybe I’m standing on the edge of a cliff. Or maybe I’m just looking out at some rolling hills.

If anything has become clear to me, it’s that nothing is clear. To be told, “You have MS,” doesn’t actually tell you very much. Each of us will have a unique experience, and our experiences will evolve and unfold at a pace largely outside of our control. For a planner like me, that’s very, very frustrating.

THE GOOD: I KNOW EXACTLY WHAT I NEED TO KNOW.I have a six-year-old child, a full-time job, friends whom I never have time to see, and a family that lives too far away. Like many of you, I consider it a good day if I can return even half of the messages on my list. Life doesn’t leave a lot of time for considering the big picture.

But learning that I have MS has crystalized one thing for me. As hokey as it sounds, the things that matter are the people I love. If everything else is stripped away (and it might be), those relationships will still be the things that matter. That’s not to say that I’ve given up on more trivial matters. I still care about whether my

09NATIONALMSSOCIETY.ORG | 1-800-344-4867 9skinny jeans fit and where I’ll go on vacation this summer. But there’s a clarity about my priorities now that I may never have gained without a big kick in the pants. MS is nothing if not a big kick in the pants.

THERE’S A CLARITY ABOUT MY PRI-ORITIES NOW THAT I MAY NEVER HAVE GAINED WITHOUT A BIG KICK IN THE PANTS.

I’ve chosen to be very public about my diagnosis. In the past three months, I’ve heard from many, many friends – and some strangers – with messages of love and support. And however difficult the reason for them, I won’t overlook what a gift those messages have been for me. I’m lucky despite it all, and I’m grateful. I hope you all have days that remind you of that as well.

Katie Jennings keeps busy juggling a son, a husband, a job, an old house, a bossy cat and unpredictable Vermont weather. She was diagnosed with progressive relapsing MS

in December 2012. She blogs about all of it at steadyshegoes.com.

Originally published at MSconnection.org/blog.

MAKING TREATMENT AND LIFESTYLE DECISIONSPeople living with multiple sclerosis and their families now have more tools available to them than ever before, including 10 disease-modifying treatments, many symptom-management strategies and a spectrum of lifestyle-related options that can improve quality of life. However, making choices about which tools to pursue can be a complicated and emotional process, and it’s not the same for any two people.

Learn about the factors you should consider when making your own treatment and lifestyle decisions. Call 1-800-344-4867 to request the DVD and companion book, Making Treatment and Lifestyle Decisions: Thinking Clearly About Benefits and Risks, now available in Spanish and English through the Society’s North American Education Program.

CONNECT WITH OTHERSConnect with other individuals newly diagnosed with MS and share your experiences at www.MSconnection.org/groups/newlydiagnosed.


MONEY MATTERS

MAKING HEALTH INSURANCE CHOICESStarting Oct. 1, most people who don’t already have health insurance will have new options for coverage when the Health Insurance Marketplace—a component of the Affordable Care Act—begins enrollment for coverage to begin Jan. 1, 2014.

The Web-based Health Insurance Marketplaces, (sometimes called “exchanges”) are a new way of shopping for health insurance coverage, allowing people to compare plans, get tax credits and other cost help. The program also includes government-certified “navigators,” who are expert health insurance counselors funded by the marketplaces to provide unbiased information, education and enrollment help to consumers at no cost. Coverage through marketplace plans is guaranteed regardless of pre-existing conditions, such as MS, and covers preventive and needed care, such as doctor’s visits, hospitalizations, maternity leave, emergency room care and prescriptions.

All plans that participate in the marketplace have to show costs and what is covered in simple, understandable language that allows people to make “apples to apples” comparisons between plans. Enrollment begins October 1st at www.healthcare.gov. Visit www.nationalMSsociety.org/ACAkickin for more information or call us at 1-800-344-4867.

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 programs and services to help people affected by MS move their lives forward.

• Combined Federal Campaign: #46654 • Combined Virginia Campaign:

Federal #46654; State #6090 • United Way: #3025

These are our approved brochure numbers, but always check your brochure; look for National Multiple Sclerosis Society, Central 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.

11NATIONALMSSOCIETY.ORG | 1-800-344-4867 11NATIONALMSSOCIETY.ORG | 1-800-344-4867 11NATIONALMSSOCIETY.ORG | 1-800-344-4867

EVENTS

2013 WALK MS—STEPPING US CLOSER TO A WORLD FREE OF MS

FREDERICKSBURG

We want to give a great big THANK YOU to the 88 participants who came out on September 14 to Tappahannock Memorial United Methodiest Church for our last Walk MS event of the year. We’re thrilled to announce that through the hard work and dedication of all our walkers and sponsors, 2013 Walk MS has raised above $300,000 to date! These funds provide vital research and programs, such as financial assistance, educational teleconferences, information and referral services, and so much more.

Of course the Walks could not go on without the many volunteers who also put in a lot of hard work. Therefore, we want to give a great big THANK YOU to them as well!

KILMARNOCK

TAPPAHANNOCKRICHMOND


A joint meeting held May 29 to June 1 by the Consortium of Multiple Sclerosis Centers (CMSC) and the Americas Committee on Treatment and Research in Multiple Sclerosis (ACTRIMS) showcased the latest directions in MS research.

Here is a selection from more than 200 presentations on research seeking to STOP MS in its tracks, RESTORE function to those who have MS and to END the disease forever.

STOP MSResearchers at the Colorado Blood Cancer Institute in Denver reported two-year results on a study following 24 people with highly active relapsing-remitting MS who were treated with bone marrow transplantation. Both relapses and disease activity observed on MRI scans were significantly reduced; however, there was significant loss of brain volume the first year, which then stabilized, and one person died. Other adverse events included

excessive levels of uric acid and liver enzymes, and decreased potassium levels. Participants are being followed for a total of five years, and additional research is needed to determine the risks and benefits for people with MS of this experimental procedure.

A study at the University of California, Los Angeles, tested whether male and female sex chromosomes influence the response of the nervous system to injury. In female mice genetically engineered to express the male (XY) or female (XX) chromosome, XY mice experienced a more severe MS-like disease. However, immune responses did not differ. If confirmed in further studies, such findings may help to explain why MS progression occurs faster in men, even though MS is more common in women.

RESTORE: REHABILITATIONThree separate studies reported results on falling issues.

• Debra Frankel, vice president, Programs, Services and Clinical Care at the Society, reported that participants in the Society’s Free from Falls program improved in balance and walking, and that the psychological impact of falls was reduced, even six months after the program. (For more on how to participate in the Free from Falls program, call 1-800-344-4867 or visit www.nationalMSsociety.org/freefromfalls.)

RESEARCH

FOCUS ON MS RESEARCH


• At the University of Illinois at Urbana-Champaign, researchers found that fall risk decreased significantly and balance improved in 10 people with MS who participated in a 12-week, home-based exercise program, compared with 12 people who did not participate. The National MS Society is funding a continuation of the study to determine how exercise can be used to prevent falls in people with MS.

• Researchers at the Oregon Health and Science University in Portland found that in 53 people with MS taking a range of medications, those taking no medications had a 27% risk of falls and that the risk of a fall increased 33% with each additional medication. Larger studies are needed to confirm how medications might affect the risk of falling, so that clinicians can consider this important aspect of MS management.

A Society-funded study at the University of Illinois at Urbana-Champaign found that video-chat sessions with a behavior change coach improved results of a six-month physical activity program among participants. The results also showed reduced fatigue, depression and anxiety.

RESTORE: REPAIRInvestigators at Endece, LLC reported that the molecule NDC-1308 reduced cell death in the spinal cord of mice with an MS-like disease and activated genes important in the development of myelin-making cells. The company is supporting preclinical research to develop NDC-1308 as a possible future treatment for repairing damage in MS.

END MSA Society-funded study at University of Miami found that 287 Hispanic/Latinos with MS were more likely to experience symptoms of motor weakness, ataxia (problems with muscle control) and bladder problems, when compared to 275 non-Hispanic whites with MS. Hispanic/Latinos also responded more favorably to interferon treatments. For MS resources in Spanish and information about Hispanic/Latinos living with MS, visit mueveteMS.org.

A study at University of Utah, Salt Lake City, using a new technique called “deep sequencing,” found that the activities of genes that instruct retroviruses was significantly increased in 14 people with primary-progressive MS. Further studies in larger numbers of people to determine the significance of these findings are about to get underway with Society funding.

Data collected from the Sonya Slifka Longitudinal MS Study, established by the Society in 2000 to study demographic and disease characteristics, use and cost of health services, access to care, quality of life, treatment and much more, is being made available to qualified investigators for studies on the direct and indirect costs of MS. These include the financial impact of out-of-pocket costs, informal caregiving, pregnancy and mental health treatment.

To read more about the joint meeting and other recent MS research, visit www.nationalMSsociety.org/research or sign up at www.nationalMSsociety.org/signup to have MS eNEWS delivered monthly to your inbox.


Don Christensen has shot six deer in the past six years — using his mouth. The 47-year-old married father of two has hunted since he was seven. Christensen also has progressive-relapsing multiple sclerosis and is quadriplegic. He now uses a sip-and-puff trigger system to fire his rifle and crossbow.

Christensen offers adaptive hunting tips at afarcry.info, which he founded to help people with disabilities access the outdoors. The idea came from a comment a friend made when Christensen’s MS had progressed to the point that he had to give up a teaching job he loved, go on disability and face the very real possibility that he would never hunt again. “My friend said, ‘You can’t do things the way you used to, but what you can do is a far cry from sitting on the couch watching hunting shows and wishing,’” Christensen recalls.

“YOU CAN’T DO THINGS THE WAY YOU USED TO, BUT WHAT YOU CAN DO IS A FAR CRY FROM SITTING ON THE COUCH WATCHING HUNTING SHOWS AND WISHING.”

DARN SURE TRYINGOn his 20-acre property in Webster, Wis., most of the trails are wheelchair accessible. “My wife LeAnn

gets me out to my deer stand and I hang out there every night during archery season,” he said. “I just love it. Once in a while I have to get serious and shoot a deer, but usually I just watch them.”

LeAnn plays a big role, from researching and posting information for afarcry.info to sewing Velcro onto a shooting pad that helps keep the stock of Christensen’s rifle in place on his shoulder. His two children have also picked up their father’s enthusiasm for the outdoors. Beth, 24, “is the shooter” who prefers deer hunting, while son Riley, 20, “loves fishing most of all.”

Christensen’s goal this year is to shoot a deer using his hand instead of his mouth, and he’s been working on strengthening every muscle from his fingers to lower back to do it. “I don’t know if it’s achievable, but I’m for darn sure going to try.”

LIVING WITH MS

ADAPTIVE HUNTINGDON CHRISTENSEN CAN BE FOUND AT HIS DEER STAND ALMOST EVERY NIGHT FROM SEPTEMBER TO JANUARY.


A SPECTRUM OF STRATEGIESIn contrast to Christensen, Russell Frye Jr. doesn’t have visible symptoms or mobility issues, but the Janesville, Wis., resident admits he had to work hard to regain his ability to shoot a bow back in the summer of 2004, after an exacerbation led to him being diagnosed with relapsing-remitting MS. “I told my occupational therapist, ‘I love to bow hunt and that’s what I want to get back to doing,’” he recalls. The therapist worked with Frye so that he could shoot a deer by September that same year — just hours before his wedding.

In the years since, Frye has become a bit more strategic in planning his hunts. “Sometimes I

wake up in the morning and don’t feel right, so I don’t hunt,” he explains. He also arranges his treatment injections to accommodate his hunting schedule, and makes sure he has someone hunting with him. If not, he tells people where he will be and what time he plans to be home in case an exacerbation occurs or he has a cognitive issue. All those steps are minor compared to the enjoyment he receives from hunting.

“It’s not so much about having a trophy or taking the animal,” he said. “It’s really about the camaraderie of the sport.”

Th is article was provided by the Society’s Wisconsin Chapter.

Drawn from his years of experience, Don Christensen offers the following tips for hunters with MS.

• Get there early: Wheelchairs can be noisy when entering the woods. Allow time for everything to quiet down again. “You should be in your stand at least a half-hour earlier than everyone else,” Christensen says.

• Wait for the animals: Whereas an able-bodied hunter can relocate to another spot if the hunting isn’t good, hunters with mobility issues can’t move as easily. Instead, be creative in changing up the same spot. Swap out decoys or use

different calling techniques, for example.• Let some go: Those with mobility

issues often are limited in their ability to reposition themselves when trying to find a clear shot. Some adaptive equipment is available to help with this, but in many cases, they’ll need to set aside the cross-hairs and go to observation mode instead.

As with any new physical activity, consult your healthcare provider beforehand. States have different regulations regarding hunting and hunting licenses; make sure to find out what your state specifically requires.

ADAPTIVE HUNTING TIPS

16 MS CONNECTION: FALL 201316 MS CONNECTION: FALL 2013

This August, the Central Virginia Chapter partnered with the Central and Western Pennsylvania Chapters to host the third annual MS Kids Camp. Camp was held at a new venue in the mountains of southwest Pennsylvania at Camp Jumonville. Children ages seven to fifteen who have a parent or guardian living with multiple sclerosis were invited to attend camp.

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 an MS certified nurse who could answer their questions about MS, as well as quiz 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 new things about MS, camp also provided a fun environment where campers could be themselves and not worry about responsibilities they may normally have at home due to their parents’ disease. Campers had the opportunity to swim, hike, participate in team building activities, play sports, and tie-dye 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 2014, contact Kathryn Zapach at [email protected] or 804-591-3039.

PROGRAMS

CHAPTER RETURNS TO MS KIDS CAMP FOR A THIRD YEAR

MS CONNECTION: FALL 2013


ADVOCACY

BE A DIGITAL MS ACTIVISTIn 2012, MS activists sent tens of thousands of emails, placed hundreds of phone calls, and made hundreds of in-person visits to members of Congress asking for their support on issues important to people with multiple sclerosis and their families. And now there are more ways for MS activists to connect—online.

DRIVING CHANGEDigital MS activists—like all MS activists—want to drive change and do so by amplifying their voice and connecting with elected officials over social media.

At www.nationalMSsociety.org/digiMSactivist, learn how to share your story, connect with other MS activists and build relationships through social media and email. The webpage includes ways to:

• Get informed. Become part of the MS Activist Network. Receive e-newsletters and Action Alerts about important pieces of legislation. Send emails with a few clicks of your mouse.

• Rise up. Learn where your elected officials stand. Speak out on issues important to you as a person affected by MS.

• Take Action. Build relationships with elected officials by posting on and liking their social media pages and by thanking them on Facebook or Twitter for their supportive actions.

• Recruit. Encourage others to join the movement by directing them to our video at ntl.ms/YouCanBeAnMSActivist, or to www.nationalMSsociety.org/digiMSactivist.

Become a digital MS activist and help shape the conversations today that will drive change tomorrow—we promise you, people will listen!

DEAR COLLEAGUE“Dear Colleagues” are important tools in supporting legislation that impacts people with MS. Th ey are letters sent by one or two members of Congress to fellow members, usually asking for co-sponsors on a new bill or seeking to infl uence recipients’ votes on a particular issue. Th e Society often helps compose letters that support legislation important to people with MS. MS Activists help gain signers through Action Alert emails.

Th is spring, Dear Colleagues were circulated in Congress to support $10 million in funding for the MS Congressionally Directed Medical Research Program, $32 billion for the National Institutes of Health, and $2.5 million for the Lifespan Respite Program. Th e Congressional MS Caucus and MS activists are working in coalition with other groups to preserve these funding levels for FY 2014. To join the eff ort, go to www.nationalMSsociety.org/MSActivist.


COMMUNITY CALENDAR 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 8 from 8–9 p.m.:Questions & Answers: Live with the Can do Experts

November 12 from 8–9 p.m.:Emerging Therapies: What Does the Future Offer?

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

18 MS CONNECTION: SPRING 2013

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.

MS CONNECTION: FALL 2013

SCHOLARSHIP PROGRAMThe National MS Society awards scholarships to highly qualified applicants who have been diagnosed with MS or have a parent/guardian living with the disease. Awards range from $1,000–$3,000 and are awarded to college-bound students who demonstrate financial need, a strong academic record, leadership, community involvement, and how MS has impacted their lives. Applications are accepted October 1, 2013 through mid-January 2014. Apply online at www.nationalMSsociety.org/scholarship. 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 scholarship and help make a diff erence in a stu-dent’s life? Contact [email protected] to learn how.


SELF HELP GROUP LISTINGGROUP TIMES AND LOCATIONS MAY VARY, CHECK WITH LEADER(S) PRIOR TO ATTENDING.

MS KNOWS NO TIMETABLE–THIS IS WHY WE OFFER SUPPORT WHEN YOU WANT AND NEED IT.

ON THE PHONE:MSFriends: Peer Telephone SupportConnect with an MSFriend at 866-673-7436, 9 am until Midnight ET.

CHAT ROOM & MESSAGE BOARDS:MSWorld—www.msworld.org

ONLINE PEER CONNECTIONS:MSConnection—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).

Hanover Group4th Th ursday, 7-8:30pmChurch of the Redeemer8275 Meadowbridge Rd.Mechanicsville, VA 23116Leader: Dana (804) 550-2280Petersburg Day Group2nd Th ursday, 10-11:30amRiver View - 201 Epps St.HopewellLeader: Melanie (804) 526-9129Petersburg Evening Group3rd Th ursday, 6-8:00pmSouthside Regional Hospital3rd Floor ClassroomLeader: Quennette (434) 246-6007 or (804) 731-9069Chesterfi eld Day Group3rd Wednesday, 12-1pmJohnston-Willis HospitalBoard RoomLeaders: Sheila (804) 739-8488Sharon (804) 794-7589

Surry County Group2nd Th ursday at 11amHope Christian Alternative(325 Banks St., Surry)Leader: Stephanie (757) 267-2329South Hill Empowerment Group3rd Wednesday, 5:30-7:30pmCommunity Memorial Health Ctr.(125 Buena Vista Circle)Leader: Starr (434) 378-2031Richmond Day Group2nd Monday, 10:15-11:30amTuckahoe YMCA (9211 Patterson Ave.)Leader: Barbara (804) 747-0298Richmond Evening Group2nd Saturday, 11:30am-1pmHealthSouth - Classroom5700 Fitzhugh Ave.Leader: Lorenzo (804) 921-9712Th e Invincibles3rd Tuesday, 7-8:30pmHealthSouth-Fredericksburg(300 Park Hill Drive)Leader: Belinda (540) 373-4377

Chronically AwesomeFor those living with MS, Lupus, Lyme and their caregivers/partners1st Wednesday - 6:00-8:00Grace Episcopal Church(303 South Main Street, Kilmarnock, VA)Leader: Teri (804)436-4750Richmond (VA Home)For those with advanced stages of MSEvery Monday, 11am1101 Hampton St.Leader: Judy (804) 359-4093Tappahannock NeuromuscularSupport2nd Monday, 10:30amCall for locationLeaders: Margaret(804) 472-4781Pat (804) 443-9657My Solutions—Online, FacebookSupport Group for Young Adultsin their 20s & 30sTo sign up, visit: http;//bit.ly/MySolutions or contact Jessica Ramirez at (804) 591-3038.

CHAPTER STAFFSherri Ellis, Chapter President: 804.591.3030; 757.319.4254

Robert McKoy, Vice President of Operations: 443.641.1206

Kathryn Zapach, Director of Programs & Services: 804.591.3039

Tiffany Epley, Development Manager: 804.591.3036

Jessica Ramirez, Programs & Services Manager: 804.591.3038

Clare Lorio, Development Manager, Teams Specialist: 804.591.3037

Matt Gregory, Systems Administrator: 804.591.3041

Diana Oakley, Manager of Finance: 804.591.3042

Deborah Richards, Finance Assistant: 804.591.3034

Ashley Chapman, Senior Statewide Advocacy Manager: 804.591.3048

Central Virginia Chapter4200 Innslake DriveSuite 301Glen Allen, VA 23060

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

Pictured above: Clare Lorio

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Documents

Fall 2013 MSConnection-Central Virginia Chapter