About MSAA

The Multiple Sclerosis Association of America (MSAA) is a national nonprofit organization and leading resource for the entire MS community, improving lives today through vital services and support. MSAA provides free programs and services, such as: a Helpline with trained specialists; award-winning publications, including, The Motivator; MSAA’s nationally recognized website, featuring educational videos, webinars, and research updates; a mobile phone app, My MS Manager™; safety and mobility equipment products; cooling accessories for heat-sensitive individuals; MRI funding; My MSAA Community, a peer-to-peer online support forum; MS Conversations blog; a clinical trial search tool; podcasts; and more. For additional information, please visit www.mymsaa.org or call (800) 532-7667.

Father’s Day is almost here!

“My father gave me the greatest gift anyone could give another person, he believed in me.”
– Jim Valvano

Happy Father's Day from MSAAFather’s Day is an opportunity to honor the special fathers in your life. You can choose to honor your own dad, a brother, uncle, son, friend or co-worker. While those who believe in us deserve to be recognized every day, on this very special day, we can pause and give thanks.  

Honor these special men with a donation to the Multiple Sclerosis Association of America (MSAA). Your donation will help us to fulfill our mission of improving lives today for the entire MS community. With each gift, you will have the option to send a personalized online card to the person being honored, letting him know of your support of MSAA.  

Your gift enables MSAA to provide vital services and support such as our toll-free Helpline, equipment distribution, MRI assistance, and more.  

“I am brimming with gratitude and appreciation for the generous support of the MSAA for the MRI scan which I received. The scan produced positive results informing my neurologist and me that my condition was stable. This fellow cannot say enough good things about MSAA!”   – GLW, Georgia

Please make your special Father’s Day donation today! Improve lives today by honoring the special men in your life.

Happy Father’s Day!

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Tana Campbell’s Race of Hope – Part 2

Written by Mark Campbell, Tana’s son

Read Part 1 of Tana Campbell’s Race of Hope

On June 1, 2013, we lined up in the back of the running pack surrounded by family and friends. We all wore the same shirts. There were 13 of us (five running and eight cheerleading), all wearing a bright orange shirt with a while ribbon on the chest surrounded by the phrase, “Fight On and Find the Cure! Multiple Sclerosis!” Prominently displayed on the back of the shirt was the MSAA logo along with some other local sponsors. We were ready, nervous and excited. We saw glances from other runners and spectators. But they weren’t puzzled or condescending looks. They were looks of astonishment and admiration. This was our first hint of just the type of day we were destined to have.

The race started and we were the last of over 750 runners to cross the starting line. Spectators were lined up on both sides of the runner’s chute. We heard their clapping and cheering once they recognized what we were doing. We crested the top of a small hill, turned a corner and were out of the sight of our family and friends. We would see them a couple more times during the race as they drove to a strategic location where we would pass at 3.5 miles and again at 7.5 miles.

Over the course of the next three hours we ran mostly on the Capital Area Greenway which follows a creek. It’s a well maintained and beautiful place to be. It never occurred to me just how much my mother would enjoy being on the Greenway. She never knew it existed and with limited mobility (she told me afterward) she never would have considered the option of experiencing it. The Greenway winds along a secluded area away from the traffic and noise of the city. There are interesting sights, numerous footbridges to negotiate and gorgeous scenery along the way. It is also a heavily wooded area that created a canvas of shade and allowed mom to keep cool throughout the race.

As we encountered the water stops along the route we heard more cheers and kind words from the volunteers handing out water and electrolyte drinks. Our route was an out-and-back course, which meant that runners who were in front of us at the start of the race were now coming back toward us. Most of the runners had no idea that we were even participating in the race because they never saw us at the starting line. I cannot count the number of times these runners clapped, cheered, smiled, yelled, waved, pumped their fists, gave us high fives, etc. It seemed like everyone who saw us wanted to acknowledge our participation. I can only imagine what my mother goes through in her mind when she gets out of the house and other people see her at the store or doctor’s office or in a restaurant. But this day, my mother was a rock star! And everyone wanted to salute her.

As we crested the final hill and made the final turn, there was such a sense of accomplishment for both of us. Mine was a physical accomplishment. Yeah, I ran a half marathon while pushing my mother in a wheelchair. But more importantly to me, my mother’s accomplishment was mental. She showed herself and others that she can enjoy life and overcome challenges. After the race was over and we were hanging out with our friends and family at the finish line, I remembered what a friend of mine who also has MS once told me. She reminds herself daily that she has MS, but MS doesn’t have her. The same is true for my mother….MS doesn’t have her.

If this is the only time we ever participate in a race together then I am very happy and will cherish this memory forever. But something tells me that this won’t be the last time. If my mom wants to do it again next weekend I will be there for her….we may be just a little slower though and I’m sure that is alright for both of us.

(FULL DISCLOSURE ALERT:  I did have to ask for help on that final hill from our running support team. It was a long, steep hill and my legs were exhausted. We estimate that they took turns pushing mom in her chair for about a half mile during the race.)

Read Part 3 of Tana Campbell’s Race of Hope

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Tana Campbell’s Race of Hope – Part 1

Written By Mark Campbell, Tana’s Son

424637_394864773961277_1025041170_nI was nervous…extremely nervous. I wanted to offer my mother an experience that she never had. Personally, I enjoy running; particularly, I enjoy running long distances. And I wanted to run a long distance with my mother. But how do you ask someone who suffers from multiple sclerosis (MS) to run a half marathon when they have trouble walking from the car to the grocery store? How do you convince someone with MS to believe that they can run in a race when they can’t stand unaided for more than a couple of minutes?  Eventually, I got up the nerve to ask my mother if she would let me push her in a wheelchair while I ran a half marathon (13.1 miles). At this moment, more than any other moment in the entire timeline of events, I was the most nervous. I was scared that my mother would laugh at me. Or maybe she would roll her eyes and say, “That’s a stupid idea!” or “We can’t do that.”  Imagine my surprise when, without hesitation, my mother said, “Yes, let’s do it!”

This is not the first time that my mother has shocked me. Throughout my whole life she made me proud, amazed and inspired. But this was an enormous challenge for her. There were so many questions: Can she tolerate the ride? Can she tolerate the length of time? Can she tolerate the weather conditions? Will she enjoy herself? Will she regret doing this? Will her painful leg spasms return from the jostling of running?  I had to remind myself that this is my mother and she has shown me time and time again that no matter the test she would prevail.

We targeted a half marathon that was local (Raleigh, NC) for us. I sent an email to the race director asking him if he would allow us to participate. He welcomed us with open arms and asked if there was anything he could do to help.  This was a tremendous weight off my mind as I envisioned some lawyer-speak about, “blah, blah, liability, blah, blah, insurance regulations, blah, blah, doctor’s note.” I wouldn’t have blamed him if he turned us away….well maybe I would blame him a little bit. Fortunately, we no longer had to worry about that. Now we had roughly three months to plan and organize our experience.

The first order of business was to pick a charity. The decision was made immediately. Mom chose the Multiple Sclerosis Association of America (MSAA). She said they have been so good to her, and the thought of giving back to them gave her a great sense of worth. We contacted MSAA and with their help created a donation page.

Then we blitzed our family, friends and business contacts for donations to MSAA in mom’s honor. Without a doubt, our best source of fundraising was through Facebook. Within a couple of days of promoting our event on Facebook, we received $3,000 in donations. People were so excited for us and they showed that with not only their donations but also their words of encouragement. We eventually were able to raise over $4,500 for MSAA, and that is our greatest accomplishment through this whole process. We even had three running friends ask to join us during the race. Mom and I just could not believe how this event was moving people, many of whom we didn’t really know.

The last thing was to figure out how to make Mom as comfortable as possible during the run. We are fortunate enough to know the owner of a local medical supply store. He loaned us the use of a great wheelchair that had more padding than a standard chair, could recline to numerous positions and had a single handlebar for pushing. It was the perfect chair for both of us. The planning was done. The only thing left was waiting for race day.

Read on for Part 2 of Tana Campbell’s Race of Hope…

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Swim for MS News – June 2013

New Swim for MS Partnership

Swim for MS swimsuits from HARDCORESWIMMSAA is pleased to announce our partnership with HARDCORESWIM to provide exclusive Swim for MS swimsuits available for purchase. HARDCORESWIM is an authentic and innovative designer, marketer and distributor of premium quality young men’s and young women’s swimsuits, training gear, clothing, accessories and related products under the HARDCORESWIM name. HARDCORESWIM is based in Southern California and all items, from start to finish, are produced in California. There are two different Swim for MS style suits are available for men and women! Check out the Swim for MS page on their site and order your suit today!

Anyone that raises at least $150 during the month of June and tags a picture of themselves swimming or in their Swim for MS t-shirt on Facebook or Twitter will be entered into a raffle to receive a Swim for MS suit! Please go to SwimForMS.org to register!

Facebook: facebook.com/msassociation
Twitter: @Msassociation #SwimForMS

Have Fun and Support the MS Community by Organizing a Graduation or 4th of July Swim for MS pool party!

  1. Choose a location – your backyard pool or local community pool.
  2. Decide the type of event – will this be a pool party or will you host a BBQ as well?! Be sure you have some games for in and out of the pool – pool volleyball, bean bag toss, horseshoes, and more!
  3. Create a list of attendees and create an invitation. Be sure to mention the date, time, location, and donation/admission fee. You can ask for a $5 donation to join the party!
  4.  Day of: Set up and have fun! Don’t forget to take some photos and ask the participants to sign our photo release form (email us for more information!).
  5. Within 30 days, please send the proceeds to MSAA at 375 Kings Highway North, Cherry Hill, NJ 08034. Be sure to include your contact information and details about your event!

 

The June Winners are…

Missy Franklin Autograph Photo:
Congratulations Akshaj, for being the top Swim for MS fundraiser during the month of May!

Modify Watch Prize:
Congratulations Jake for winning a Modify Watch!

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Spots Still Open for MSAA’s Children’s Program in Denver, CO

There are several open registrations remaining for MSAA’s upcoming patient education program at Dave & Buster’s in Denver, CO on Saturday, June 15th at 9 am. The free program titled, Bridging the Communication Gap between Parents with MS and Their Children, invites parents and children to come together for special workshops which teach parents how to talk to their children about MS and enable children to learn about living with MS in a supportive manner through fun, interactive games and activities. The morning begins with a full breakfast buffet and ends with each child registered receiving a free $10 Power Card for video and arcade games following the program. Registration is required by June 13, 2013. To register, please call the RSVP at (800) 532-7667, extension 155 or RSVP online at support.mymsaa.org/dbdenverco.

The Denver event marks the third children’s program in a series of six this year which are scheduled across the United States. The presenters include Dr. David Rintell from Harvard Medical School and Sue Rehmus, MSAA board member and founder of her own nonprofit, Children’s Hope for Understanding Multiple Sclerosis (CHUMS). After a summer break, the remaining children’s programs will begin in the fall and are scheduled for September 21st in Boston, MA; October 19th in Baltimore, MD; and November 9th in Orlando, FL. The response to these programs has been tremendous and we would love to get your feedback if you have attended pervious programs or want MSAA to bring a children’s program to your area. Please let us know by responding to this post, emailing us at msquestions@mymsaa.org or calling (800) 532-7667, extension 154.

 

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MSAA Presents at CMSC Conference on Aquatic Exercise and MS

By Peter Damiri, MSAA Senior Director of Programs

Each year MSAA exhibits an information booth at the Consortium of Multiple Sclerosis Centers (CMSC) annual conference. This year, in addition to staffing the booth in the exhibit hall, I had the distinct honor of representing MSAA as a faculty presenter during the conference.

As part of the full-day session on Current Topics and Trends in MS Rehabilitation, I had the privilege of sharing the stage with several prominent healthcare professionals as we presented on the topic of Aquatics and MS.

Lead by Dr. Yasser Salem, Linda Csiza, PT; Michele Harrison, PT; and Julie See, BS; this two-hour presentation was the culmination of six months of work to research, write and publish: Aquatic Exercise & Multiple Sclerosis: A Healthcare Professional’s Guide. This 48-page guideline serves as a comprehensive manual explaining the discipline of aquatics and MS, covering topics such as research studies, patient assessments, the unique properties of water, and sample exercise techniques. The program featured each author from the various sections of the book presenting on his or her findings and fielding a lively question and answer period.

The CMSC presentation and aquatics book is part of MSAA’s larger Swim for MS initiative. Supported by national sponsor Genzyme Corporation, Swim for MS is a national fundraiser in which volunteers are encouraged to create their own swim challenge while recruiting online donations. Funds raised support individuals with multiple sclerosis through the many programs and services offered by MSAA, including the increased awareness, understanding and availability of aquatic exercise for the MS community. In addition to the healthcare professional’s guide, MSAA will soon offer a series of patient education materials on this topic including brochures, sample aquatic exercise flip charts and online video segments. These items are still under development so please be patient as we will inform you as to their availability as soon as possible. For more information on aquatic exercise and MS, please visit the Overall Wellness section of MSAA’s new website: https://mymsaa.org/manage-your-ms/overall-wellness/#Exercise.

 

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Consortium of MS Centers Annual Meeting – Part 2

Today has been an action packed day here at CMSC with scheduled presentation offerings from a wide array of specialists. This morning, I attended an interactive session designed for social workers or nurse case managers in discussing the multidisciplinary approach to many different types of client interactions for approaching difficult situations in practice and MS clinics.

This afternoon I was able to attend a program called “Progressive MS” put on by Dr. Patricia Coyle. Dr. Coyle, provided an overview of the history of progressive forms of MS, their etiology, the diagnostic process and considering potential differential diagnoses, and possible future therapies which are entering clinical trials including studies on:  Hydroxyurea, Amiloride, Lipoic Acid, BAF312, Masitinib, and Fingolimod. You can read about some of these studies in our 2013 Research Update.

Additionally, Dr. Coyle emphasized that in her patients she encourages making sure that Vitamin D and Vitamin B12 levels are normalized, that general health issues including diet and exercise are appropriately managed, trying to have good sleep hygiene, as well as a care plan to best manage symptoms. All of these factors together contribute to a plan for management of Progressive forms of MS.

These two sessions were only a few held this day, with other programs ranging from discussions of “MS Mimickers” and “Long Term Outcomes in MS.” In addition, there was an open poster session which provided an interaction and discussion opportunities about emerging research and abstract papers.

This Consortium is a great opportunity for all individuals involved in the care of MS patients to collaborate and discuss ways to best improve the comprehensive care plan and multi-disciplinary approach to MS management.

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Consortium of MS Centers Annual Meeting – Day 1 Recap

Greetings from Consortium of Multiple Sclerosis Centers (CMSC) Annual Meeting!

Peter Damiri at the MSAA booth for CMSC 2013

Senior Director of Programs Peter Damiri at the MSAA booth for CMSC 2013

This week (May 29- June 1, 2013) I have the pleasure of attending the 27th CMSC Annual Meeting. It is easy to get into the mindset that the MS community is small – after all, it is always mentioned that MS is a rare disease. However, the CMSC Annual Meeting is a great example of just how many people care about issues related to the multiple sclerosis (MS) community – from the neurologists and nurses who practice in the MS clinics, to the social workers, patient advocates, and non-profits dedicated to MS. The CMSC meeting is a reminder that many people have dedicated their lives to altering the future of individuals diagnosed with MS, to try and ensure a better future.

Today (May 29), Dr. Robert Herndon provided an introductory speech welcoming everyone to the conference. He gave an overview of MS called “60 Years of Advancement In MS Management.” He explored just how far research has come since 1950 both in terms of the changes in the diagnostic process, “dogma’s” of the time period about MS, and major advances in treatment. It is astounding to think of just how far we have come even though we have a way to go. The dedication of the professionals in the room was apparent, this is an important cause and one that 1,800 attendees at CMSC believe in.

Of the many other programs available today I was also able to attend an educational session called “Pain in Management in MS” with speakers Karyn Seebach, PsyD and Heidi Maloni, PhD, ANP-BC-MSC. Dr. Seebach spoke about psychological approaches in MS pain management, and Dr. Maloni provided an overview of MS pain management and also the controversial cannabis use in MS pain. Many strategies were discussed including looking at the whole person and treating pain as a complex issue which requires a “biopsychosocial” approach (biological, psychological, and social approach). To read more about MS pain management please see our recent issue of The Motivator.

Tomorrow there are a number of other engaging programs, so stay tuned for another CMSC recap later this week!

Peter Damiri at the MSAA booth for CMSC 2013

Another shot of Senior Director of Programs Peter Damiri at the MSAA booth for CMSC 2013

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World MS Day 2013

Wednesday, May 29, 2013 is World MS Day.  To mark this occasion MSAA will be participating in a Twitter Chat with Healthline at 11 AM today. To join the chat please visit:http://www.healthline.com/health/27487.

To help raise awareness of what it is like living with multiple sclerosis the Multiple Sclerosis International Federation created a video of six inspiring young people from around the world have shared their mottos for identity, relationships and the future.

What’s your Motto? from World MS Day on Vimeo.

MSAA encourages to show your support for World MS Day and inspire the world by sharing a motto that gives you strength, even in the most challenging of times.

 

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Register for a Free Webinar Presented by TEVA Pharamaceuticals about The Affordable Care Act

TEVA Pharmaceuticals is sponsoring a free webinar tomorrow, May 21st at 1:00 PM EST entitled “The Affordable Care Act’s Health Insurance Marketplaces: Overview for the MS Coalition.”

MSAA is an active participant in the MS Coalition and encourages anyone who is looking for general information on the Affordable Care Act to participate. The program will provide an overview of the new and emerging health insurance Marketplaces as well as MS specific information.

Please note that registration is REQUIRED. Be sure to click the following link: (https://tevausa.webex.com/tevausa/onstage/g.php?t=a&d=794060172 ) to insure your spot in the program.

 

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