FALL 2012 HAMPTON ROADS CHAPTER
MS CONNECTION NEWSLETTER VIRGINIA’S OCEAN TO BAY RIDE RAISES OVER $475,000.
2012 BIKE MS: AN UNFORGETTABLE RIDE PAGE 02 INSIDE 06 08 16 18 THIS ISSUE STAIR CLIMB: ARE YOU UP FOR A CHALLENGE?
ANNUAL MEETING AND RESOURCE FAIR
RUN MS: DO YOU ENJOY RUNNING?
RESEARCH: NEW FINDINGS AT THE AAN MEETING
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MS CONNECTION: FALL 2012
EVENTS: BIKE MS
2012 BIKE MS: AN UNFORGETTABLE RIDE As we put the finishing touches on another great Bike MS and start planning for 2013, we want to thank the 500 cyclists and 200 volunteers who took to the roads of Virginia’s Eastern Shore for our Ocean to Bay Ride June 2 & 3. Through their amazing efforts, the 2012 Bike MS has raised over $475,000 to date. 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 OUR 2012 SPONSORS: • • • • • • •
93.7 BOB FM EMD Serono Forbidden City Imperial Dining Oceanaire Resort Hotel Bay Coast Railroad Best Western of the Eastern Shore Teva Neuroscience
WE ARE ADDING A SHORT 36-MILE ROUTE ON SUNDAY OUT OF CAMP SILVER BEACH BACK TO CAPE CHARLES. THIS WILL GIVE THE 2-DAY CYCLISTS ANOTHER OPTION AS THEY HEAD OUT SUNDAY MORNING.
In addition, thank you to our Breakaway Bike Shop Sponsors who provided bike mechanics along the route for the weekend of the ride: • • • • •
BikeBeat Conte’s Bicycle & Fitness Conte’s Newport News Fat Frogs – Chesapeake Scat Bikes
Exciting news for Bike MS 2013! Due to an overwhelming demand, we are adding a SHORT 36-mile route on Sunday out of Camp Silver Beach back to Cape Charles. This will give the 2-day cyclists another option as they head out Sunday morning. Cyclist registration for the 2013 Bike MS is now open at www.fightMS.com. Registration is $10 plus accommodations until August 31, 2012. On September 1, 2012, registration will be $33 plus accommodations. If you are not able to ride a bike, but still want to be a part of Bike MS – VOLUNTEER! Volunteers are an essential part of the ride. Please contact Karla McCarraher 757-4909627 ext 46205 at karla.mccarraher@nmss. org.
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COMMUNITY CALENDAR PROGRAMS IN THIS SECTION ARE NOT ORGANIZED BY THE NATIONAL MULTIPLE SCLEROSIS SOCIETY. Multiple Sclerosis Educational Group
“GET THE LATEST ON MS RESEARCH AND TREATMENT IN A COMFORTABLE AND CONFIDENTIAL ENVIRONMENT”
The Multiple Sclerosis Educational Group is your opportunity to exchange information and coping strategies and get the latest on MS research and treatment in a comfortable and confidential environment. This program is designed for MS patients, caregivers, and families. 4th Tuesday of the Month at 5:30 pm Neurosciences Conference Room Riverside Medical Office Building 12200 Warwick Blvd., Newport News, VA 23601 The group is offered by Riverside Center for Neurosciences and meets on an ongoing basis. For more information call 875-7880.
NATIONAL MULTIPLE SCLEROSIS SOCIETY Hampton Roads Chapter 760 Lynnhaven Parkway, Suite 201 Virginia Beach, VA 23452 757-490-9627 or 1-800-344-4867 www.fightMS.com info@fightMS.com Chairman: Jim Dyche Interim Chapter President: Craig Robertson Design: Robyn M. Hirsch © 2012 National Multiple Sclerosis Society, Hampton Roads Chapter www.facebook.com/NMSSHRC
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.
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MS CONNECTION: FALL 2012
NEWLY DIAGNOSED
NEWLY DIAGNOSED TELECONFERENCE SERIES
If you or someone close to you has recently been given a diagnosis of multiple sclerosis, you probably have a lot of questions and concerns. Or, you may be feeling so overwhelmed by the diagnosis that you aren’t sure what kinds of questions to ask. The Newly Diagnosed Teleconference Series is an opportunity to hear useful information directly from experts in the field. These experts will discuss information that is most relevant to someone who has been diagnosed with MS within the last two years. Each teleconference lasts just one hour and is accessible via a toll-free number. You can ask questions or just listen to the information. Best of all, you can do so from the privacy of your own home. Participate in several calls or just the one that interests you.
WHAT IS A TELECONFERENCE?
A teleconference is an opportunity to learn new information from the comfort of home by calling into a designated number to hear an interactive presentation.
SEPTEMBER 5TH, 2012 AT 7:00 PM MS 101: MYTH VS. FACT
Whether you have or may have MS, or care about someone who does, finding the right information is an important step. Learning more about the disease can help ease the anxiety and confusion that sometimes comes. This call will cover the basics of multiple sclerosis including the courses, treatments, common symptoms, myths about the disease, and much more. Registrations for this call will be taken up until 5pm on September 5th.
SEPTEMBER 12TH, 2012 AT 7:00 PM TREATMENT OPTIONS
Although there is no cure for MS, effective strategies are available to modify the disease course, treat flare-ups, manage symptoms, improve function and safety, and provide emotional support. In combination, these treatments enhance the quality of life for people living with MS. This call will provide an overview of the types of medications used to treat MS, including the ways the medications are administered, how often, and side effects. The registration deadline for this call is September 5, 2012.
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SEPTEMBER 19TH, 2012 AT 7:00 PM WHO TO TELL AND HOW TO SAY IT: DISCLOSURE FOR THE NEWLY DIAGNOSED
For more information or to register for the series, please call the chapter at 757-490-9627 option 2 or visit www.fightMS.com.
We know it can be difficult to hear the words “You have MS.” There are so many questions that arise in the first few years about what the diagnosis means for you, how it will impact your relationships and career, and how to manage the chronic nature of the disease. This teleconference will address how to cope with the new “uninvited guest” in your relationships with family and friends and how to navigate through the disclosure and accommodations process in the workplace. The registration deadline for this call is September 12, 2012.
TAHIRAH, DIAGNOSED IN 2004
NATIONAL MS SOCIETY SCHOLARSHIP PROGRAM
MS shouldn’t stand in the way of an education. This 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.
2012 HAMPTON ROADS SCHOLARSHIP WINNER: LEIGHANNE DAVIS
Applications for the 2013 Scholarship Program will be accepted October 1, 2012 through mid-January 2013. For more information about the Scholarship Program or to find out how to apply, visit www.nationalMSsociety.org/ scholarship.
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MS CONNECTION: FALL 2012
EVENTS: STAIR CLIMB MS
ARE YOU UP FOR A CHALLENGE?
36, 72, OR 108 FLIGHTS OF STAIRS • AN UNBELIEVABLE VIEW • A WORLD FREE OF MS!
stair climb
We are very excited to be returning to the Westin Virginia Beach Town Center for our 2nd Annual Stair Climb MS on September 22, 2012! DO YOU HAVE WHAT IT TAKES TO MAKE IT TO THE TOP OF THE TALLEST BUILDING BETWEEN PHILADELPHIA AND CHARLOTTE? Stair Climb MS is a unique event where participants climb 36, 72, or 108 flights of stairs to the top of the Westin Virginia Beach Town Center 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! 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. Don’t worry; we’ll be with you every step of the way! Climb Category Non-Competitive (Non-Timed) Military/First Responder Competitive (Timed)
Flight Options 36 Flights of Stairs 36, 72, or 108 Flights of Stairs 36, 72, or 108 Flights of Stairs
Registration Fee $50 $50 $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
Stair Climb MS Ball Cap Stair Climb MS Dry Tec Short Sleeve Shirt Stair Climb MS Long Sleeve Dry Tec Shirt Stair Climb MS Fleece Jacket or Hoodie
Register today by calling the chapter at 757-490-9627 option 4 or visiting www.fightMS.com.
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VOLUNTEER: STAIR CLIMB MS
NOT A CLIMBER? THEN STEP UP AND VOLUNTEER FOR STAIR CLIMB MS Join our dedicated volunteers and contribute your energy and passion to help the National Multiple Sclerosis Society, Hampton Roads Chapter move toward a world free of multiple sclerosis. Volunteers make our events happen. There are many different teams to choose from at the Stair Climb MS event. Pick one and join us Saturday, September 22, 2012 at the Westin Virginia Beach Town Center. SET UP/BREAKDOWN TEAM - Volunteers will assist with the set up and breakdown of tables, chairs, materials, and signage. Must be able to lift boxes, stand for long periods of time, and climb numerous flights of stairs. No seated positions available. INFORMATION TEAM - Volunteers will answer participants’ questions and direct them to various event areas. Attendance at a training session right before the event might be required. REGISTRATION TEAM - Volunteers will check-in participants, hand out packets and direct them to the Timing Chip Company to receive Participant Bib and instructions. Attendance at a training session right before the event might be required. PARTICIPANT SUPPORT TEAM - Volunteers will provide support to various participant areas including, but not limited to: Start Line, Rest Stop, Finish Line or After Climb Reception. SPIRIT TEAM - Volunteers will cheer the participants on in the stairwell or as they cross the finish line. Volunteers are asked to bring lots of enthusiasm, spirit, and cheer! STAIR SUPPORT TEAM - This team will be stationed in the stair well to ensure the safety of our participants. All volunteers must be able to stand for long periods of time and climb numerous flights of stairs. No seated positions available. VOLUNTEER CHECK IN TEAM - Check in volunteers and direct them to their assignment. If you interested in volunteering, please contact Karla McCarraher at (757) 490-9627 ext 46205 or karla.mccarraher@nmss.org or visit our website at www.fightMS.com.
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MS CONNECTION: FALL 2012
ANNUAL MEETING AND RESOURCE FAIR THURSDAY, OCTOBER 4, 2012
“CELEBRATE PAST SUCCESSES AND LOOK FORWARD TO ANOTHER YEAR OF EXCELLENT PROGRAMS, SERVICES, AND FUNDRAISING ACTIVITIES”
Please join us for the Hampton Roads Chapter’s 2012 Annual 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 Board of Trustees for 2013, hear a wonderful keynote presentation from our own Ashley Chapman, Statewide Advocacy Manager for the Virginia Chapters of the National MS Society, and applaud the efforts of the countless volunteers, fundraisers, and sponsors that have contributed generously to our mission. Keynote Presentation: We are MS activists. The National Multiple Sclerosis Society and individuals nationwide are together on the frontline to advance federal, state, and community policies and programs that could impact the lives of people with MS. Ashley Chapman, Statewide Advocacy Manager, will discuss the prevalent policy issues in Virginia and the ways in which you can join us on the frontline as an MS activist. 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: Westin VB Town Center (4535 Commerce St., Va. Bch., VA) Resource Fair & Cash Bar Begin-5:15 pm Dinner and Presentation Begin-6:30 pm Cost: $15 per dinner. You may pay by credit card or check in advance; payment will not be accepted at the door. Scholarships are available upon request. RSVP REQUIRED BY September 24th! Visit www.fightMS. com or call us at 757-490-9627.
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EVENTS: DO IT YOURSELF (DIY)
DIY EVENTS CAN CREATE A WORLD FREE OF MS
Did you know there are literally thousands of ways you can help? People who want to contribute to the mission to end MS are invited to dream up and produce original events that raise money for education, support, and research. Every year, volunteers organize and host golf, billiards and bowling tournaments, auctions and raffles, dinners, concerts, rummage sales, wine tastings, barbecues, bake sales, motorcycle rides, and car shows. Holiday themes are also popular, such as Easter egg hunts or Halloween parties. The types of benefits to create are limited only by the imagination. These events may raise anything from a few hundred to tens of thousands of dollars. There’s no minimum required and certainly no maximum. And you don’t even have to create a brand-new event. You can add a fundraising element to pretty much any existing occasion. How much time it takes to prepare depends on how elaborate the plans are. They can be as simple as asking friends to pay a few dollars at the door to attend a private party. On the other hand, a large-scale gala might take four to six months, or even longer, to plan.
NO MATTER WHAT THE EVENT, YOUR SUPPORT AND CONTRIBUTION MAKE A DIFFERENCE!
CHECK OUT THESE FIVE EASY STEPS TO DIY FUNDRAISING SUCCESS:
1. Come up with a fundraising idea that is meaningful to you. Think of what you and your potential supporters enjoy doing and what might attract a broad base of support. 2. Let us know your plans by registering via our online form! This is required and the online form is available on our website, www.fightMS.com. 3. Take advantage of our resources. Download materials from our website to help guide your fundraising process. We even have online tools for you to send emails and design a web page! 4. Publicize your event! Use our online Participant Center to send emails or mail letters to your friends, family members and colleagues. Reach out to everyone you know. Post signs on community bulletin boards and messages on Facebook and Twitter. If you’re hosting the event at a business, ask how they can help promote your event. 5. Have fun! Enjoy the day of your event and be sure to let everyone know how much their support means for people living with MS. Be sure to take lots of pictures and post them on our Facebook page.
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MS CONNECTION: FALL 2012
WAYS TO GIVE
A WALK TO REMEMBER BY APRIL BROWNLEE
Tim Cooke is doing something big. Something 2,180 miles big. Something 14 states big. Something five-and-a-half months big. Something Appalachian Trail big. “Big issues require big actions. I wanted to do something that was challenging. Not that my challenge is anything like the challenges people living with multiple sclerosis day to day have to deal with,” says Tim. His wife, Cathy, was diagnosed with the disease in 2010. On March 7, Tim left his home in the Texas Panhandle town of Canyon and embarked on his big adventure. He calls it “Hike MS-AT2102.”
CATHY AND TIM COOKE
Tim will spend nearly six months hiking the Appalachian Trail — one of the longest continuously marked footpaths in the world. He began walking the trail in Georgia and hopes to finish up in Maine by mid to late September. “About 2,000 to 3,000 people attempt to hike the entire trail each year and about 10 percent of them actually finish,” he says. To ensure his big idea was really, really big, Tim decided to raise the stakes. With the aid of the National MS Society’s new Do It Yourself (DIY) fundraising tool, Tim met his initial goal of $7,500 and is now aiming for $10,000. Tim knew a trek of this magnitude would require time, careful planning and lots of training. But first, he had to convince Cathy. “I’ve had the Appalachian Trail in the back of my mind since I was much, much younger. I started putting it all together and deciding maybe this would be a great challenge,” says Tim. His plans began to really take shape when Cathy didn’t shoot down the idea. “It’s huge!” says Cathy. “It’s not a five-and-a-half month vacation. It’s a sacrifice for him. I’m sure it’s a wonderful adventure, but who chooses to sleep on the ground and eat ramen noodles for that long and walk for eight hours a day? Maybe for a week or two, but half a year? His passion really touches me,” she says.
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Months of living in almost complete isolation has to get to a guy. But Tim, who admits he sometimes talks to himself when he’s alone on one of the three 20-mile practice hikes he takes each week, says he’s prepared. “It gives me time to contemplate and pray. I can get lost easily in that.” Tim plans to average about 15 miles a day, but will take it a little bit easier in the beginning until he gets his “trail legs.” He’ll suit up with about 21 pounds of gear, plus food. To keep his load light, he won’t even pack an MP3 player. And, yes, he expects he’ll be eating a lot of ramen noodles. When he gets to civilization — about every week — Cathy, who works for Southwest Airlines, will fly out to meet him.
“IT’S NOT A FIVE-AND-A-HALF MONTH VACATION. IT’S A SACRIFICE FOR HIM. I’M SURE IT’S A WONDERFUL ADVENTURE, BUT WHO CHOOSES TO SLEEP ON THE GROUND AND EAT RAMEN NOODLES FOR THAT LONG AND WALK FOR EIGHT HOURS A DAY?” “I’ll go out there and take him into town for food and a bed and a shower,” says Cathy. “And a giant margarita!” laughs Tim. “And a giant margarita,” Cathy agrees. Cathy will have their dogs, Willie and Waylon, to keep her company. But the couple, who met in 2003 and were married in 2004, are prepared
TIM AT THE GEORGIA/NORTH CAROLINA BORDER to miss each other. “Part of what will keep me going is that I’ve got many, many names I’m taking with me ... many people to think and pray about who inspire me,” Tim says. “When I don’t want to go on, I’ve got these people in my pocket who choose to go on every day and that’s going to give me courage. They’re my motivation. And Cathy is my inspiration, certainly.” Cathy will update Tim’s DIY Fundraising page and social media pages throughout his hike to keep followers up to date. You can follow Tim Cook’s big adventure at www.hikeMS-at2012.org. And start your very own adventure by visiting the National MS Society’s DIY website at: www. doityourselfMS.org. April Brownlee is a senior manager for Development, focusing on Walk MS and Bike MS events in the South Central Region’s Amarillo office.
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MAKE A DIFFERENCE WHILE LEARNING NEW SKILLS
Build real-world skills while helping to create a world free of MS. The Hampton Roads Chapter is looking for qualified full or part time college students to intern. Internships are available in a variety of fields. Positions are unpaid, but the experience will be invaluable! Academic credit/ community service credit is available.
AVAILABLE INTERNSHIPS: • Business Administration • Client Programs (Social Work) • Communications/Public Relations • Corporate Relations • Special Events • Volunteer Program Management Contact Karla McCarraher at 757-490-9627 ext 46205 or by email at karla.mccarraher@ nmss.org if you are interested in rounding out your education or if you know a student who may be interested.
MS CONNECTION: FALL 2012
VOLUNTEER: MOVEMENT AMBASSADOR
BECOME A MOVEMENT AMBASSADOR. INSPIRE. EDUCATE. MOVE.
We know that so many of you in Hampton Roads want to do something about MS now… but don’t know what to do! We have the opportunity for you--become a Movement Ambassador! The Movement Ambassador program is a way for you to help the Hampton Roads Chapter spread the word about programs, research, and events in the area we live. We often get requests to make presentations or attend health fairs but are unable to accommodate due to our limited staff and booked schedules. Therefore, we will provide the Movement Ambassadors with tools and resources to make the best presentations possible. You even get to pick your “comfort zone!” If you’re a Bike MS or Walk MS participant and would like to engage people to become involved in our events, that will be your area of expertise. If research is your interest, we’ll make sure you get all the information necessary to give a great presentation. If you are interested, please contact Robyn Hirsch at 757-490-9627 ext 46208 or robyn. hirsch@nmss.org.
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WAYS TO GIVE
WORKPLACE GIVING
Friends of the National Multiple Sclerosis Society have a variety of ways to support the Hampton Roads Chapter at the workplace. While this is a very convenient way to support the Chapter, several of the numbers have changed so please be certain that you are selecting the National Multiple Sclerosis Society (it may be listed Multiple Sclerosis Society, National). Combined Federal Campaign is for Federal employees – both military and civilian. Mark #48028 on your pledge card. (Please, do not be confused with Multiple Sclerosis Association of America – MSAA.) Combined Virginia Campaign is for State employees. Look for Multiple Sclerosis Society, National and mark your card accordingly or just WRITE IN National Multiple Sclerosis Society #6049. United Way: While the National Multiple Sclerosis Society is not listed as a United Way agency, you may WRITE IN National Multiple Sclerosis Society on your pledge card and all United Ways will honor your designation.
City Employees in selected cities and school systems will have the National Multiple Sclerosis Society listed among agencies. Choose #6049. If you don’t see the number, be sure to designate by WRITING IN National Multiple Sclerosis Society. These are our approved brochure numbers, BUT always check the brochure and make sure; look for National Multiple Sclerosis Society, Hampton Roads. Please call the Chapter at 757-490-9627 if you have any questions.
SUPPORT & ADVERTISING OPPORTUNITIES
Help the Hampton Roads Chapter share important information about research, programs, services and events by supporting our Newsletters. 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 757-490-9627 ext 46208 or robyn.hirsch@nmss.org to learn more.
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MS CONNECTION: FALL 2012
LIVING WITH MS
GIVING CARE BY TERRI KUCZYNSKI, M.DIV., CT
All of us give care throughout our lives, whether it is through holding a hand or helping with daily needs from transportation to bathing. We give care when we listen to another’s sadness and when we fix a meal. We give care when we send a card or manage medication. Giving care to a loved one with MS can be very rewarding and at the same time unbelievably challenging. In some ways being a caregiver is like using a battery-powered drill. At first the drill is fully charged and the task at hand seems to be manageable. As the charge dies down, the task becomes more difficult until the drill just can’t continue. The only way to go on is to recharge the drill. If the caregiver does not recharge over time, even the smallest task becomes overwhelming.
RICK, DIAGNOSED IN 1991
SOME WAYS TO RECHARGE ARE TO: 01 Ask for help. Even simple things such as getting a gallon of milk for you or providing respite care so you can take a walk around the block can make a big difference.
02 Join a support group or an Internet chat room set up for carepartners. (See ‘Carepartners Connect’ on following page for suggestions).
03 Take care of your body with proper nutrition, exercise and sleep.
04 Do something — call a friend, write a letter, read — that gives you a daily break from the caregiving role.
05 Stay connected with community — don’t become isolated.
06 Laugh. Watch funny movies or TV programs.
IF A CAREGIVER DOES NOT RECHARGE OVER TIME, EVEN THE SMALLEST TASK BECOMES OVERWHELMING. Just recently I visited a friend who was caring for her husband. We talked about the many difficulties of caregiving. She talked about her feelings of helplessness and shared that at times
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she felt a lot of anger, which in turn made her feel guilty. She went on to tell me that her husband’s physical care could be overwhelming, but keeping track of all the day-to-day activities of life sometimes seemed crushing. She felt weary and alone in this role that she was so unprepared for. After we talked, I walked out of the room and, when I turned to say goodbye, I saw her struggling to help her husband transfer from the sofa to a wheelchair. I then witnessed
15 the true meaning of giving care. In the middle of the transfer, I saw them share a loving embrace. It was very brief, but very intentional. At that moment I could not tell who was caring for whom. I saw two people caring for each other. What a great way for both to recharge. Terri Kuczynski, M.Div., CT, is a patient/ family counselor at the Rex Cancer Center in Raleigh, N.C.
CAREPARTNERS CONNECT There are a wealth of ways for carepartners to connect online. Here are a few of them: Those caring for someone with MS can create their own website or visit another’s at www.CaringBridge.org. Here, carepartners can keep an online journal and photo gallery, ask for help with tasks, and post updates for friends and family who in turn can post messages of support. Today’s Caregiver at www.caregiver.com includes a map, clickable by state, of area support groups, and a special section where caregivers can post their tips for others. It also offers articles and information on everything from nutrition tips to long-distance care. The Well Spouse Association at www. wellspouse.org is a nonprofit membership organization that offers peer-to-peer support and educates healthcare professionals and the general public about the unique challenges that “well” spouses face every day.
The National Family Caregivers Association at www.thefamilycaregiver.org provides an online forum for caregivers to post questions or talk to others in similar situations. The Society’s online community at www. MSconnection.org offers a secure place for carepartners to connect. Members can create a personal profile to share posts, updates, blogs, photos, videos and links, and search for other members by demographics, shared interests and more. The Society also offers a page for carepartners at www.nationalMS society.org/carepartners with information and resources on accessible housing, hiring home help and more. Carepartners can also participate in the Society’s Online Peer Connections program, www.nationalMS society.org/onlinepeerconnections. Here they select a peer support volunteer from an online database and arrange to speak one-or-one via email or telephone on an agreed-upon topic. All conversations are confidential.
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MS CONNECTION: FALL 2012
EVENTS: RUN MS
DO YOU ENJOY RUNNING? WHY DON’T YOU RUN TO STOP MS!
Join the movement by running as part of the Hampton Roads Chapter’s Run MS program. Run MS is a unique ongoing campaign in which you can participate in your favorite marathon/half-marathon/5k run/etc. and raise funds to support the National MS Society at the same time. This opportunity enables you to reach two common goals: to test your athletic endurance in the event of your choice and to help create a world free of MS. You CAN make a difference with each step you take as you Run to Stop MS.
STEP #1-CHOOSE A HALF-MARATHON, MARATHON, 5K, 10K, OR TRIATHLON AND REGISTER! Run MS is a separate entity from races in the area, so register for your respective race AND with Run MS at www.fightMS.com. Many races have an option to run on behalf of a charity and will donate part of your registration.
NEED SOME INSPIRATION? • Peroni Crawlin’ Crab Half Marathon & 5k-10/7 • Blue Moon Wicked 10k-10/27 • The Great American Mud Run-11/3 • Freedom Marathon/Half Marathon-11/11 • Turkey Trot 10k & 1M-11/22 • Surf-n-Santa 10 miler & 5k-12/8 • Virginia is for Lovers 14k-2/ 9 • Yuengling Shamrock Marathon/Anthem Half Marathon or Towne Bank 8k -3/16-17
STEP #2-RAISE FUNDS FOR RUN MS Start off on the right foot by setting a fundraising goal. While there is no fundraising minimum to participate in the Run MS program, we encourage you to set an attainable goal. Once you’ve settled on your goal, make sure to get the word out.
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We have excellent online tools to help you reach your goal! Once you register for Run MS, you will have access to a personal web page where you can put pictures, talk about why you Run, or your connection to MS. Your commitment will be the reason they choose to give you a donation. We also have sample fundraising letters and emails that you can send out directly from your webpage, as well as fundraising ideas and tips!
STEP #3-TRAIN AND RUN TO STOP MS This part is up to you. Please prepare yourself adequately for the event. All running events require dedicated training and preparation. Visit Active.com for training schedules and tips. Then get out there, have fun and Run to Stop MS!! Make your personal achievement of running in a marathon, triathlon or other endurance event even more memorable by helping those who live with the unpredictable challenges of multiple sclerosis. Funds raised from Run MS provide help for today and hope for tomorrow through education, support, advocacy, and research funded by the National MS Society, Hampton Roads Chapter.
MONEY MATTERS
ONLINE HEALTH EXPO OFFERS HELP On September 27, join the Allsup True Help Disability Web Expo, a free online live event dedicated to providing expert guidance on health-related financial matters, including health insurance, Medicare and Social Security Disability Insurance. People with disabilities, caregivers, healthcare providers, advocates and volunteers can tap into a wealth of resources and information on how to access benefits, community resources, financial planning for people with disabilities and more—all in one place. Representatives from the National MS Society and more than a dozen leading nonprofit organizations will answer questions, provide screening services and listen to feedback during live chats. The event takes place 10 a.m. to 5 p.m. (EST). Register at WebExpo.Allsup.com. For people not able to attend on the day itself, the Expo’s online True Help Resource Center will provide presentations, videos and print resources on demand until December 26. People can also continue to contact experts via email and network with fellow attendees.
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MS CONNECTION: FALL 2012
RESEARCH
NEW FINDINGS AT AAN MEETING BY MARCELLA DURAND
In April, over 12,000 neurologists and researchers gathered in New Orleans to present the latest research in multiple sclerosis at the American Academy of Neurology’s annual meeting. Here are some highlights.
STOPPING MS A phase III trial of experimental oral therapy BG-12 found that the average annual relapses over two years in 1,430 people with relapsing-remitting MS was reduced by 44 to 51 percent over placebo. Disability progression was not reduced significantly. The most common adverse events reported were gastrointestinal events and reddening; a small study in 56 people taking BG-12 found that pretreatment with aspirin reduced the latter. However, whether long-term use of aspirin in combination with BG-12 is effective and well-tolerated has yet to be determined. Biogen Idec applied to the FDA in February 2012 for marketing approval of BG-12 to treat MS. In a phase III trial that compared intravenous alemtuzumab against standard dosing of Rebif (interferon beta-1a), the relapse rate in 840 people with relapsingremitting MS was reduced by 49 percent or
the risk of disability progression reduced by 42 percent. Genzyme plans to file for FDA approval of alemtuzumab for MS in the second quarter of 2012. Results of a phase III trial of Gilenya (fingolimod) indicated that a daily dose reduced the relapse rate by 48 percent compared with placebo in 778 people with relapsing-remitting MS. Gilenya is the first oral disease modifier for MS to be approved by the FDA. First results from a clinical trial testing a combination of Copaxone and Avonex showed some evidence that they were better together than either therapy alone. However, the combination was not superior in reducing relapses or progression of the disease.
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In a separate study, researchers were able to identify gene signals in people who had participated in a clinical trial of Copaxone that could predict a high response from the therapy. This may point the way for future research on optimizing MS treatment choices. A study of a green tea extract called Polyphenon E given to 10 people with relapsing-remitting or secondary progressive MS found a 13 percent increase in average levels of a molecule that reflects nerve tissue integrity. The researchers are now conducting a phase II study to determine safety and neuroprotective effects in 48 people.
RESTORING WHAT’S LOST Researchers have found that blocking LINGO-1, a nervous system molecule, increases myelin repair in mice. The first human trial evaluated the safety of the approach in 42 people with relapsing or secondary-progressive MS. Researchers reported no serious adverse events and support moving this repair strategy to a phase II clinical trial. After a prominent food and wine critic with MS developed a decrease in taste, researchers at the Mount Sinai School of Medicine looked further into this lesserknown symptom of MS, called dysgeusia. In seven case reports of people with MS with dysgeusia, MRI revealed lesions in a small area of the brain stem. In some
cases, loss of taste had been the first MS symptom, meaning it may be an important signal.
ENDING MS FOREVER In a study of 500 people with MS, researchers found that men with low vitamin D may be more susceptible to disability, while women with low levels of the vitamin had more brain lesions if they had a genetic marker common to people with MS. The study points to possible gene and gender influences in vitamin D levels and the risk of developing MS. For more AAN news, visit www. nationalMSsociety.org/research. Marcella Durand is on the staff of Momentum, the Society’s national magazine.
NEW STUDY ON MARIJUANA A clinical trial of 37 people with MS with spasticity resistant to standard medications found that the half who smoked marijuana once a day experienced significant improvement compared to placebo. However, the researchers also found that participants showed significantly reduced thinking ability after smoking marijuana. The Society is currently supporting a clinical trial of different forms of cannabis products to test their ability to relieve MS-related spasticity.
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MS CONNECTION: FALL 2012
NEWLY DIAGNOSED
THE GATHERING TABLE BY RONDA GIANGRECO
much longer, I asked myself the question, “Then to where should I walk now?” My answer: to the kitchen! An avowed foodie, I always loved to cook. My kitchen is my sanctuary, where I can dispense with aggravations while surrounded by the aroma of bubbling soups and the comforting familiarity of my pots and pans. What better place to face the fear gnawing at my gut? It might not have been a conventional treatment plan, but why not attempt to triumph over MS with steaming plates of pasta?
On July 26th, 2008, I was a 53-year-old woman who considered herself very fortunate. I was just back from my latest adventure at a cooking school in Italy. My husband, Michael, and I had spent the day wine tasting in Napa with friends. Life was good. One day later I was a disabled woman. Learning that your wife has been diagnosed with sudden onset multiple sclerosis would be difficult for any man to accept, but for my husband it was a particularly cruel twist of fate. The disease had entered Michael’s life when he was just a child, taking away his mother when he was 16. Now it was back for his wife. Worried that I might not be able to walk for
However, when I made the audacious vow to my husband that I would host a dinner party every Sunday night for an entire year as a means of warding off this disease, he thought I had lost my mind. One would have to be a bit certifiable to think about cooking 52 dinners while living with a neurological condition, but a discussion about parties would be immensely more entertaining than one about motorized wheelchairs. I would stare down MS with spatula in hand. We began by inviting every friend we knew. The first six who accepted the invitation would join us at our home in Sonoma, Calif., for an evening of laughter, good food and plenty of great wine. Throughout the year, we added people we had met at events, through friends, and even a woman I had struck up a conversation with in
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a grocery store aisle. Eventually, more than 130 people received our email invitation each week. As we sat around our big, square dining table — referred to in the furniture industry as a “gathering table” — we heard stories that made us weak with laughter and others that brought tears to our eyes. We were given fresh insights into the people we thought we knew well, while we also formed dozens of new friendships.
“I LEARNED FROM THE STORIES OF OTHERS THAT THE CHALLENGES WE ALL FACE HELP FORM THE CORE OF WHO WE ARE, GIVING US AN INSIGHT INTO THE STRENGTH WITHIN.” There was the sweet, older neighbor who joined us for dinner one night and informed us that he had been Bozo the Clown in his younger days. The entire table was awestruck when he burst into character. Then we discovered one of our friends had helped make The Allman Brothers’ rock band famous. Another had been on a plane with the terrorists a week before 9/11. We had staunch conservatives sitting across from diehard liberals. We hosted Christian fundamentalists at the same table as a lesbian couple. And everyone learned there is more uniting than separating us. By the time week 52 arrived, I had made gallons of marinara sauce, scores of ravioli and mountains of gelato. In doing so, I was able to conquer my
21 fear of the future. I learned from the stories of others that the challenges we all face help form the core of who we are, giving us an insight into the strength within. The icing on the cake … I was still on my feet. MS didn’t win. I did. I could never stomach my story being touted as yet another example of how merely thinking positively can change the course of your life, though. Anyone who has spent time in a hospital bed looking up at grim faces knows that there are some hurdles you cannot clear just by employing a perky disposition. The last thing I want to do is add to anyone’s burden by suggesting otherwise. My tale is not about bucking up. Simply put, it is a story about learning that I had more grit and resolve than I had imagined. I found that good friends are a powerful therapy, and I discovered that even though fate may shove you in a direction you don’t want to go, you can still find a means of traveling the road on your terms. Ronda Giangreco has written a book about her year-long adventure called The Gathering Table — Defying Multiple Sclerosis with a Year of Pasta, Wine & Friends available at www.amazon.com. Sign up for her free monthly newsletter at www. thegatheringtable.net.
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PROGRAMS: CAREGIVER OF THE YEAR
DO YOU THINK THAT YOUR CAREGIVER IS THE BEST? Show your caregiver that you care by nominating them for the special recognition they deserve! One extraordinary caregiver will be crowned “Caregiver of the Year” by the Chapter and will receive a prize package fit for a king or queen.
How Does the Nomination Process Work? Please mail or email your letter of support (1,000 words or less) telling us how your caregiver shines above all the rest. Please be sure to include a cover letter answering the questions listed below:
01 What is your name, address and phone number? 02 What is the name, address and phone number of the person you are nominating? 03 What is your relationship to the nominee? (ex. Spouse, parent, friend) 04 How long has s/he acted as your care partner? 05 Describe his/her responsibilities as a care partner. The Hampton Roads Chapter will accept nominations for the 2012 Caregiver of the Year through October 1, 2012. Things to know: • Please include pictures of the nominee and yourself if at all possible. • The nominee must have provided care to the nominator within the last 12 months. • Winners will be selected by a panel.
• By submitting a nomination you grant permission to the National MS Society (“NMSS”), Hampton Roads Chapter to use, reuse, publish and republish your name, voice, likeness, and/or other indicia of identity, in any medium now known or hereafter developed, alone or in conjunction with other material, without restriction as to changes or alterations, for editorial, educational, promotional and advertising purposes, including without limitation in connection with the solicitation of contributions and the furtherance of the corporate objectives of NMSS, and to use biographical and other information about me in conjunction therewith. • Submit your nomination by October 1, 2012: Mail: National MS Society Hampton Roads Chapter Attn: Caregiver of the Year Panel 760 Lynnhaven Parkway, Ste. 201 Virginia Beach, VA 23452 Email: robyn.hirsch@nmss.org
Show your caregiver that you care by nominating them for the special recognition they deserve! For more information or if you have questions, please contact Robyn M. Hirsch at 757-490-9627 ext 46208 or robyn.hirsch@ nmss.org.
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VOLUNTEER SPOTLIGHT
A VOLUNTEER YOU CAN COUNT ON: DEBBIE SMITH Debbie Smith does not let MS slow her down. A devoted Bike MS Volunteer Coordinator, Self Help Group Co-Leader, Movement Ambassador, and MS Activist, Debbie is very involved with the Hampton Roads Chapter. You can always count on her to lend a helping hand and get the job done.
Because of her former management experience, Debbie became engaged in helping with Volunteer Management for our bike MS weekend. She makes sure the event is fully manned with volunteers from the Start to the Finish, from rest stops to our overnight camp and everywhere in between. She has taken on this daunting job with enthusiasm and she does it well. In addition, she sits on the Bike MS Event Committee throughout the year to help organize and plan the event.
DEBBIE SMITH WITH DELEGATE LIONELL SPRUILL
Debbie also has a talent for lifting other’s spirits. She is the type of person you don’t forget once you meet her. Therefore, Self Help Group Leader Margie Cortimilia willingly took Debbie up on her offer to help her Co-Lead our Chesapeake Self Help Group. In this role, Debbie assists in making sure the group’s meetings are filled with great information, uplifting conversations, and support. Outside of the group, Debbie continues to spread her positive attitude as she represents the National MS Society as a Movement Ambassador. At Chapter events and programs, as well as community health fairs, Debbie is often found at the Mission Table talking to people about MS and her experience. She takes it upon herself to attend several seminars and programs throughout the year to educate herself and feels it is important to share her knowledge, story and positive attitude with others. But Debbie doesn’t stop there, she also advocates for those with MS at the local and state level. As an MS Activist for the Chapter, she has traveled to Richmond for MS Legislative Action Day and met with legislators about the importance of affordable medications, housing, and transportation.
THE HAMPTON ROADS CHAPTER IS TRULY GRATEFUL FOR ALL THAT DEBBIE SMITH DOES. SHE IS A TRUE FRIEND OF THE CHAPTER. THANK YOU DEBBIE FOR ALL YOUR HARD WORK!
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MS CONNECTION: FALL 2012
ADVOCACY
MAKE YOUR VOTE COUNT BY RENEE VANDLIK
PREPARE TO VOTE
This year, citizens in 30 states will have to comply with voter identification laws. Contact your local polling precinct ahead of time to find out what you’ll need.
Election Day 2012 is on the horizon, so get ready to cast your vote for who best represents the issues you care about. Here’s what you need to know to vote in the elections on November 6.
THE BIG PICTURE
This fall, Americans will cast votes for the presidency, every member of the U.S. House of Representatives and one-third of the U.S. Senate. What’s different? Since the 2010 census, 15 million Americans became eligible to vote and an anticipated 50 million more will vote this November due to stronger engagement in national campaigns. However, people with disabilities register to vote at a 16 percent lower rate than other Americans. And with 1 in 10 eligible voters having a disability, that’s a lot of people whose voices aren’t being heard. Make sure yours is. National Voter Registration Day is September 25, 2012. Register yourself and learn how you can register others at www.usa. gov/Citizen/Topics/Voting/Register.shtml.
Also ask about accessibility: you don’t want to show up, only to find out you can’t get in the door. Since 2005, The Help America Vote Act requires every precinct in the country to have at least one voting machine or system accessible to persons with disabilities, including those with vision impairments. Learn more at www.aapd.com/what-we-do/voting/. If it’s difficult to vote in-person, plan to vote absentee. Learn more at www. longdistancevoter.org.
THE INFORMED VOTER
Go to www.nationalMSsociety.org/advocacy to learn more about issues important to people with MS, such as health care, accessibility and medical research. Then find out where the candidates stand on those issues— www.yourcandidatesyourhealth.org is one place to start. Renee Vandlik is the Society’s director of State Government and Local Government Relations.
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EVENTS: WALK MS
WALK MS IS WHERE WE CONNECT Over 1,000 participants connected with friends and family members at our April Walks in Newport News at the Mariners’ Museum and in Virginia Beach at Mt. Trashmore and then in July at the Waterside Marketplace in Norfolk. You made a difference in the lives of over 2,800 Hampton Roads residents and their families who live with the daily challenges of multiple sclerosis.
We’re thrilled to announce that through the hard work and dedication of our walkers, sponsors, and volunteers, Walk MS 2012 raised more than $115,000!
Hampton Roads Chapter 2012
These funds provide vital research and programs such as financial assistance, educational teleconferences, information and referral services, durable medical equipment, and so much more. Of course the Walk could not go on without the many volunteers whose hard work and dedication helped make the walks such great events!
CARE-A-LOT PET SUPPLY
See you at our Spring 2013 Walks!
THANK YOU TO OUR SPONSORS: Atlantic Bay Mortgage Group Care-A-Lot Pet Supply EMD Serono, Norvartis, Teva Neuroscience Waterside Marketplace 94.9 The Point
94.9 THE POINT
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FINANCIAL ASSISTANCE
The Chapter provides shortterm, limited, and reasonable financial assistance to address the specific challenges that living with MS can cause.
FINANCIAL ASSISTANCE CATEGORIES: • • • • • • •
General 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 757-490-9627 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 2012
MEMORIAL & TRIBUTES
The Hampton Roads Chapter would like to sincerely thank the generous contributors who made memorial and tribute gifts between December 17, 2011 and June 2012. The memory of a loved one, or the excitement of a special occasion, lives on through these thoughtful gifts.
MEMORIAL GIFTS Connie Brockett Friends from Newport News Shipbuilding Delbert A. Emerson Dolores Estey Marlene Hall Tuesday Bridge Group Herb Friedman Sandra Viola Donald Higgins Jay & Leslie Legum
Michael Newmark Charles Elliott Pediatric Surgery Physicians & Staff Marilyn Stoops Rhonda T. Roehr Michael Abley & Nancy Rodrigues Mandy Schmidt Dennis Allion Thomas Schmidt
Phyllis K. Littwin Sandra Banisky Shirley Guy Gail King Miles Leon Ruth Ann Schoenbaum
Stephen L. Tabakin Jeffrey Chernitzer Katherine Cohen Judy Fox Doris Friedman Karen Jaffe Alvin & Nancy Wall Jack & Frances Weintraub
Cleta M. Malone Stuart & Linda Hines
Marcia Ann Weiss Bobbie Edwards
Carson William Mason II Emilee Mason
TRIBUTE GIFTS In Honor of Holly Beth Patrick Michael Patrick
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SELF HELP GROUP LISTING FOR MORE INFORMATION CONTACT (757) 490-9627 UNLESS OTHERWISE NOTED. SOUTHSIDE
PENINSULA
Virginia Beach Morning Group 2nd Tuesday of the month @ 10 am (February, May, August, and November group meets at 11:30am at Frankie’s Place for Ribs: 5200 Fairfield Shopping Center, Va. Bch., VA) Kempsville Public Library 832 Kempsville Road, Virginia Beach, VA For more information contact Pete at (757) 497-6594 or peterhennessy64@yahoo.com.
Gloucester Group 1st Wednesday of the month @ 10:30 am Riverside Wellness and Fitness Center 7516 Hospital Drive, Gloucester, VA
Chesapeake Group 3rd Tuesday of the month @ 7 pm Lifestyle Fitness Center @ Chesapeake General Hospital 800 N. Battlefield Blvd., Chesapeake, VA For more information contact Margie at (757) 482-3247. Suffolk Group 3rd Wednesday of the month @ 6:30 pm Magnolia United Methodist Church 1764 Wilroy Road, Suffolk, VA For more information contact Willie Ann at (757) 539-0139. Southside Group 4th Wednesday of the month @ 3 pm Meyera E. Oberndorf Central Library (September & November: Libris Room, October: location TBA) 4100 Virginia Beach Blvd., Va. Bch., VA
African American Inspirational Group 1st Thursday of the month @ 11 am Hampton Public Library 936 Big Bethel Road, Hampton, VA For more information contact VeeGee at (757) 696-2540 or Veegee215@yahoo.com. Williamsburg Group 2nd & 4th Wednesday of the month @ 5:30 pm James City County/ Williamsburg Com. Cntr. 5301 Longhill Road, Williamsburg, VA For more information contact JoAnn at (757) 220- 0902. Peninsula Evening Group 2nd Thursday of the month @ 5:30 pm Sentara Careplex Hospital (York River Entrance, Conf. Rm. C) 3000 Coliseum Drive, Hampton, VA For more information contact Diana at (757) 727-0427.
CONNECT WITH AN MSFRIEND AT 866-673-7436, 7AM UNTIL MIDNIGHT ET. FIND SOMEONE TO CHAT WITH AT WWW.MSCONNECTION.ORG OR WWW.MSWORLD.ORG.
NON-PROFIT ORGANIZATION U.S. POSTAGE PAID Norfolk, VA Permit # 162
Hampton Roads Chapter 760 Lynnhaven Parkway Suite 201 Virginia Beach, VA 23452
CHAPTER STAFF
(L to R) Michelle Derr, Karla McCarraher, Robyn Hirsch
Craig F. Robertson, Interim Chapter President 860-508-4215; craig.robertson@nmss.org Michelle R. Derr, Vice President of Finance and Administration x46202; michelle.derr@nmss.org Robyn M. Hirsch, Director, Programs & Services x46208; robyn.hirsch@nmss.org Karla McCarraher, Director, Special Events x46205; karla.mccarraher@nmss.org
THE HAMPTON ROADS CHAPTER HAS A NEW PHONE SYSTEM!
You may have noticed new options when calling the chapter office. We apologize if this has caused any confusion. You can reach the staff by pressing 1, then dialing staff extensions directly. If you don’t know who you need to speak to, press 0 to leave a message in the general mailbox and we will direct your call to the appropriate person. Email is also a fast and effective way to contact chapter staff.
WE MOBILIZE PEOPLE AND RESOURCES TO DRIVE RESEARCH FOR A CURE AND TO ADDRESS THE CHALLENGES OF EVERYONE AFFECTED BY MS.