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…

Share

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!

Share

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.

 

Share

MSAA’s Artist of the Month for June 2013

MSAA is very proud to present our 2013 Art Showcase – celebrating the work of artists affected by MS.

We have received many wonderful submissions from across the country and are delighted to share their work and their stories with you. Please visit our online gallery to view all of the submissions.

June 2013 Artist of the Month:
Cheryl Vanderloop

"Heaven's Door" by artist Cheryl Vanderloop

“Heaven’s Door” by artist Cheryl Vanderloop

About the Artist:
“I am a 45 year old female that has always had an interest in art. I was diagnosed with multiple sclerosis is 2001. I enjoy drawing, watercolor, acrylic painting, pottery and jewelry making. I’ve found that MS can be unpredictable and through my art, I’ve learned to develop patience and calm my mind. It also gives me hope and helps me be a more positive person.”
Read more

Be inspired – please send an online card featuring artwork by MS artist Cheryl Vanderloop and spread awareness of MS and MSAA.

Share

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.

 

Share

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.

Share