Access MDA Fall 2014

News, events and updates from the MDA community

by Quest Staff on October 30, 2014 - 9:05am

Quest Fall 2014

Hustle for Muscle: A family affected by MD forms endurance running team to raise money for MDA

Nate Sammler (in red), with his brother, Zack, and sister, Kirsten, running the 2012 Des Moines Marathon.
Nate Sammler and family attend a baseball game.

When Nate Sammler’s wife, Kim, was diagnosed with myotonic muscular dystrophy (MMD or DM) in December 2013, the news came as a total shock to the couple from Des Moines, Iowa, and their family. Spurred by the diagnosis, Sammler’s brother-in-law, Matt Getting, got tested soon after and found that he, too, has MMD.

In spite of the bad news, the family rallied around one of Getting’s hobbies, endurance running, and created Team Muscle Hustle to participate in MDA’s Team Momentum program and run the Bank of America Chicago Marathon (Oct. 12). Getting is a longtime endurance runner who has completed numerous races, from Ironmans and Olympic triathlons to half and full marathons.

“He’s pretty hardcore,” says Sammler of his brother-in-law.

Getting explained his attraction to endurance running in an email to Quest.

“Endurance sports, in general, give me a sense of accomplishment and allow me to push my boundaries, both mentally and physically,” writes Getting. “It also allows me to escape the daily hustle and bustle of life.”

Although Getting was recently diagnosed with MMD, he hasn’t let that stop him from training.

“I’ve had symptoms (hand cramps) for the past year or so, but I was officially diagnosed last December,” he writes. “From my perspective, the only thing that has changed is attaching a label to my diagnosis — everything else has remained the same — and I’m grateful for it. I do my due diligence by having my heart checked every year, and I mitigate the risks by eating real food, meditating, doing yoga and taking care of myself.”

Initially Team Muscle Hustle set its fundraising goal at $4,000, but it quickly became clear that they would surpass that number. In fact, the team increased its goal to $10,000 and surpassed it. The team coordinated a silent auction that raised an additional $1,800 to help put them over the mark. 

As of press time, Team Muscle Hustle had raised more than $12,600.

“There’s no better way to get myself into shape, raise some money and awareness, and do it at a pretty cool event, too,” says Sammler.

Strenuous exercise may be harmful to those with neuromuscular disease. Always check with your doctor before starting any kind of exercise routine. Be sure to ask your doctor if your heart function is adequate before beginning a running or training program. For more, read the Questarticle “Exercising with Muscle Disease” online: quest.mda.org/series/exercising-muscle-disease.

MDA is launching a brand new series of Team Momentum races for 2015. The series will include some of the same events we had for 2014, as well as brand new events for 2015. Stay in the loop and join us for an upcoming event at mdateam.org.

Tips from a Team Momentum Coach

George Buckheit, founder and head coach of Capital Area Runners in Washington, D.C., has coached hundreds of runners in his 35-year coaching career. This year, he has joined Team Momentum as the coach for the Marine Corps Marathon this October in Washington D.C. Here are a few tips Buckheit has for first-timers:

  • Start slow: “A common mistake people make is they think if you want to get fit, you have to run hard,” says Buckheit. “The marathon is all about running at a relaxed pace. Sprinting a mile or two doesn’t really help when you’re running 
  • a marathon.”
  • Wear the right shoes: “The best line of protection keeping you from being injured is shoes,” he says. “Get fitted for a pair of shoes that’s correct for your foot and gait.”
  • Dedicate yourself: “For the average person, running a marathon is possible if you’re committed and willing to do the work. The runners who have good experiences are those who put the time and effort in.”

Posting Bond for a Cause: MDA Lock-Up participants share their experiences raising money for MDA

Tim Scarbeary, who has Becker MD, says he enjoys MDA Lock-Up because it's his way of saying "thank you."

MDA Lock-Up — an activity in which participants are “jailed” to raise “bail money” to support MDA programs, including summer camp — provides a way for community members to give back and raise money in a fun way. One participant who really understands this is Tim Scarbeary, who works as a loss-prevention specialist for Chico’s in Fort Myers, Fla. Scarbeary was diagnosed with Becker muscular dystrophy (BMD) when he was 4 or 5 years old and has been involved with MDA ever since.

“I use the [MDA] clinics, and as a youngster I went to summer camp. They [also] helped me with wheelchairs and leg braces, and I would do Labor Day parades,” says Scarbeary. “So when I got older and I worked for a guy who did the Lock-Up for a long time but could no longer do it, and the local Fort Myers chapter approached me, I of course said ‘yes.’” 

Scarbeary says he always has a good time at the Lock-Up, but the overall experience is what keeps him involved. “It’s a great time to say ‘thank you’ to the charity that’s helped me my whole life and helps me every day. They fight for us every day, and so I can fight for them for one day,” he says.

In past years, Scarbeary has raised up to $5,000, and his total for this year is already near $1,000. His secret? “The No. 1 tool now is social media, like Facebook, for online donations,” he says. “You can get your word out to a lot of people quickly.”

When it comes to Lock-Up fundraising, Scarbeary has a kindred spirit in Dallas, Texas, resident and 10-year Lock-Up participant Les Davis. “When you do these Lock-Ups, you get a chance to meet these children and the strength they have is just amazing,” says Davis. “It’s an inspiration to see the courage they live with, and it’s a good feeling for me, personally, that I was able to make a little bit of a difference.”

This past year was Davis’ 10th, and he wanted to celebrate the anniversary by raising more money than he ever had before. “I asked my employer, my friends and my vendors for a little something special this year,” says Davis, “and they came through for me. We had our best year yet.”

This year, Davis raised more than $8,000, which he estimates puts his 10-year total at somewhere between $35,000 and $40,000 raised for MDA research and support services. 

Contact your local MDA office to learn more about MDA Lock-Up events in your area and about other volunteer opportunities to help save and improve the lives of people with muscle disease.

Campus Life: UNC student Andrea Lane doesn’t let her LGMD slow down her busy college experience

Andrea Lane on campus at UNC Chapel Hill.

When Andrea Lane, a biostatistics major at University of North Carolina at Chapel Hill who has limb-girdle muscular dystrophy (LGMD), plans for classes, she has to think about more than just what topics interest her; she also has to consider accessibility. Fortunately, UNC has a robust Accessibility Resources department that helps Lane and other students with issues like these.

“If I need a classroom to be moved, they’ll immediately move it,” she says. “It’s never been an issue. They’ve also done a lot to make the campus accessible, like adding automatic door openers and elevators. They also help with textbooks, putting them in an electronic format for me if they’re not already available.”

Lane suggests that people with neuromuscular disease who are applying to college visit the school and meet the person who runs the disability resources center.

“You can never assume that the campus is accessible,” she says. “You need to go and visit and find out exactly what they consider accessible and what kind of resources they have. And try to live on campus if you can; developing independence is important, whether that means living on your own or with personal assistants.”

In addition to taking advantage of the campus’s disability resources, Lane uses a Segway, a two-wheeled self-balancing motorized vehicle, to get around.

“It’s pretty great,” she says. “You’re standing up so you’re using your muscles instead of sitting down and maybe losing those muscles. Another [positive] thing is the psychology of it: You’re up higher, so you’re not below people — and just the idea of that is kind of cool! And mine is now modified with a seat [in case I need to sit down].”

Lane, who is currently a junior, is active in many ways around campus. In addition to her classes — she says she chose to study biostatistics because she “couldn’t imagine not taking a math class” — she tutors a 6-year-old girl in piano through a UNC program that pairs students with local underprivileged children. And this summer she visited London on a five-week art- and music-focused study-abroad trip. Lane found London to be well-equipped for people with disabilities, and in addition to seeing the sights, she met one of her favorite actors.

“I saw ‘Richard III’ and I got to meet Martin Freeman,” she says. “A couple of my friends and I went and I was on a lift and it broke down, so it took 30 to 45 minutes for me to get out. So by the time we got out, he was just hanging out in the bar and we got to meet him. It was really exciting.”

Check out MDA’s webinar Riding Solo — Living Independently in College with Neuromuscular Disease. Other Transitions Center resources include college planning and financial aid information, app recommendations, MDA’s career center and more. Be sure to check out the Transitions bloggers as many of them chronicle their college experiences in their blogs. 

Fight the Flu

People with neuromuscular disease are at a higher risk for serious and possibly life-threatening complications from the flu. Because of this, MDA’s online Flu Season Resource Center provides a wealth of information about influenza and how to prevent it, as well as links to helpful resources for the 2014–15 flu season.

Through MDA, those with neuromuscular disease can receive a flu shot from their local MDA-sponsored clinic, or they can be reimbursed (up to $35) for the cost of the flu vaccine received from licensed providers, including those at retail pharmacies.

Positive Self-Image: Melissa Shang starts a petition for a disabled American Girl doll

Melissa Shang

Every year, the American Girl doll company releases a “Girl of the Year” doll that aims to tell a story about success and the challenges of being a modern American girl. At the end of 2013 around Christmas, when Melissa Shang, an 11-year-old girl who has Charcot-Marie-Tooth (CMT) disease, looked at the selection of American Girl dolls, she wondered why there wasn’t a Girl of the Year who has faced challenges like her. 

“The dolls are supposed to represent girls as they are today,” says Eva Shang, Melissa’s sister. “But the most recent one that was released, [Isabelle], was a girl who was blond and a dancer, like almost every other American Girl doll.”

Because of this, Melissa and her sister decided to take action. Eva Shang had experience working on petitions and online campaigns, so she and Melissa started a petition on change.org to call on American Girl to release a doll with a physical disability. After being mentioned on The Huffington Post, the petition gained a lot of attention and is now at over 144,000 signatures.

“It’s pretty exciting,” says Melissa, who attended MDA summer camp for the first time this year. “The petition was just suddenly on websites and everything.”

Soon Melissa and Eva were appearing all over the Web and were even interviewed on the HLN network.

“[Being on TV] was a lot of fun, but I was also pretty nervous,” says Melissa.

The campaign was big enough to elicit a response from American Girl; however, they haven’t yet committed to making a doll with a physical disability that is in a wheelchair. Eva hopes to involve more people and possibly larger organizations to help get the word out.

“It’s the kind of story that really resonates with people because the disability community affects so many people, so many people are in it,” says Eva. “I feel like American Girl really respects Melissa and takes her concerns seriously, but they don’t have as much of an incentive because she’s just one girl.” 

In the meantime, Melissa plans to continue to enjoy her American Girl dolls. She likes to make stop-motion videos with them and post the videos on social media.

Sign Melissa’s petition at change.org/p/american-girl-release-an-american-girl-with-a-disability

A Landmark Victory: Update to the MD-CARE Act signed into law

In September, the MDA community celebrated a tremendous victory in the fight against muscle disease. The Senate passed the newest MD-CARE Act (Paul D. Wellstone Muscular Dystrophy Community Assistance, Research and Education Amendments Act), following the successful passage of the House version of this critical legislation in late July. The MD-CARE Act was signed by the President on September 26.

The MD-CARE Act, originally passed in 2001 and first reauthorized in 2008, is a game-changer for the muscular dystrophy community, as it provides the research and infrastructure needed to accelerate discovery and bring drugs to market for all nine forms of muscular dystrophy. Since its passage, research in muscular dystrophy has exploded, resulting in scores of clinical trials and improved health care for people with muscular dystrophy.

Among the areas of emphasis within the legislation’s newest amendments are cardiac and pulmonary research and an increased focus on resources for adults living with muscular dystrophy. 

To let policymakers know just how important these issues are, MDA advocates visited elected officials in their hometowns and on Capitol Hill, sent emails, made phone calls and kept the MD-CARE Act trending on social media. 

As a result of these ongoing efforts, government funding for muscular dystrophy research has grown to $75 million annually, nearly 400 percent more than when the MD-CARE Act first won approval in 2001. 

Plus, patient care guidelines for Duchenne and Becker muscular dystrophies are available worldwide, and guidelines for four other forms of muscular dystrophy (congenital, facioscapulohumeral, limb-girdle and myotonic) are nearing completion. 

Collaborating for a Cure: MDA’s disease registry equips clinics with better information to fight neuromuscular disease

Almost 1,300 patients are now enrolled in the MDA U.S. Neuromuscular Disease Registry, a project that began in January 2013 with the goal of better understanding neuromuscular disease in order to provide better care. The registry is now adding new patients at a rate of 100 per month.

“The registry has the opportunity to influence therapeutic development and clinical care,” says Jodi Wolff, director of clinical services for MDA. “We are able to follow patients long-term and have a lot of information no one else is collecting, which allows us to identify new standards of care and things that are making a difference in health outcomes but may not be well-known or widely practiced by physicians. There are so many things we don’t know about how to best care for people with neuromuscular disease.”

In April, Wolff gave a presentation to the American Academy of Neurology (AAN) about the registry. Since then, MDA has formalized its relationship with the AAN, so patients can expect to hear more about related clinics and how they are following quality measures and standards of care.

To find out about how to enroll in the MDA U.S. Neuromuscular Disease Registry, please contact the MDA Health Care Services department at  520-529-2000 or healthcareservices@mdausa.org.

Strong Bonds: Families featured on the 2014 MDA Show of Strength Telethon

Eric Von Schaumburg
Kasey Bennett

In case you missed it, this year’s Show of Strength profiled families from across the country that are directly affected by neuromuscular disease. From 31-year-old Eric Von Schaumburg, a salesman in the financial business who was just diagnosed with ALS last year, to teenagers like 13-year-old sports-lover Kasey Bennett and 15-year-old Kate Pecora, who plans to be a doctor when she grows up, these profiles reflect the wide spectrum of individuals and families that make up the MDA community. Also included in this year’s Show of Strength were 5- and 3-year-old brothers JoeJoe and Dominik Stoop, as well as 8-year-old Torrance Johnson.

“Both through the broadcast of our telethon and a record amount of online conversations, more Americans gained a compelling vision of the courage of our families overcoming difficult circumstances, as well as the generosity of our sponsors and supporters who help MDA fund the fight against muscle disease,” said Steven M. Derks, MDA President and Chief Executive Offic

Go to MDA’s YouTube page to view all of the behind-the-scenes interviews from the Show of Strength, as well as the profiles mentioned above. Watch the full Telethon and explore additional content at mda.org/showofstrength. And, if you’d like to support MDA’s mission to save and improve the lives of people with muscle disease, please give what you can at mda.org/donate

Together, We Are Progress: MDA uses social media to encourage people to share their favorite MDA memories

Leading up to and following this year’s Show of Strength Telethon, MDA encouraged its community members to share their favorite MDA-related memories on social media using the hashtag #MDAmemories. 

To read and view the MDA memories shared by the MDA community, visit mda.org/showofstrength/memories.

MDA Takes the ALS Ice Bucket Challenge: Social media phenomenon shines the spotlight on ALS, bringing awareness and contributions for research

It’s amazing what the power of one family — and social media — can do. In late July, Pete Frates, a 29-year-old former college baseball player with ALS, posted a video on Facebook and challenged a few friends to follow his lead. From there, the ALS Ice Bucket Challenge ignited a worldwide frenzy on social media, inspiring people to get involved in the fight against ALS (also commonly known as Lou Gehrig’s disease) by dumping a bucket of ice water on their heads. 

The campaign has started a national conversation, raising both money and awareness for ALS research. Donations to MDA since the challenge began are up from a year ago during the same period. 

Some of MDA’s very own, like President and CEO Steven M. Derks and MDA National Goodwill Ambassador Reagan Imhoff, accepted the challenge, as well as numerous national sponsors and corporate sponsors. International Association of Fire Fighters General President Harold Schaitberger accepted the challenge in memory of several fire fighters who’ve waged the fight against ALS. Before dumping the ice water, Schaitberger also recognized the IAFF’s 60-year partnership with MDA in the fight to find treatments and cures for neuromuscular diseases, including ALS. 

MDA is the world leader in the fight against ALS, funding lifesaving research, services, advocacy and education. MDA’s involvement with ALS began in the early 1950s when Eleanor Gehrig, widow of beloved Yankees first baseman Lou Gehrig, was searching for a way to fight the disease that had taken her husband’s life. Mrs. Gehrig served more than a decade as MDA National Campaign Chairman. MDA has made progress against ALS every decade since then, funding more research than any other voluntary health organization in the United States. 

“Increased awareness about ALS is critical to help us learn more about the disease,” said MDA President and CEO Steven M. Derks. “But what we need more than ever is action. Together, our collective actions can translate into significant progress against ALS. We hope everyone will join us to fight back by making a donation at mda.org and participating with us in the ice bucket challenge and at a local MDA event in your community.”

Outlook on BMD

This August, people affected by Becker muscular dystrophy (BMD), whether personally or through a relative or friend, attended the sixth annual National Becker Muscular Dystrophy Conference to learn more about the disease and meet an extended BMD community. The conference included research updates and panels about cardiac care, pulmonary care and living with BMD. If you couldn’t make it to the conference this year, you can find out what you missed by watching videos from the conference.

Did You Know?

October was National Disability Employment Awareness Month (NDEAM), a national campaign that aims to start a larger conversation about disability employment issues and recognize the disabled workers. The theme for 2014 is “Expect. Employ. Empower.”

Many considerations are involved in selecting a career, applying for jobs and advocating for workplace accommodations. And, people you meet through MDA activities can be a great source for tips and referrals during this process. The resources provided on the MDA Transitions site have been shared by members of the MDA community and are a good starting point as you navigate various employment options. Go to the Transitions career page to learn more, and be sure to visit MDA’s national Facebook page to connect with professionals who have neuromuscular diseases and who are leaders in their respective fields.

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