News and updates from the MDA community
MDA partnered with sister organizations and more than 200 members of the MD community at a Feb. 25 congressional briefing on the enormous impact of the MD-CARE Act, imploring lawmakers to reauthorize this crucial legislation on behalf of the 100,000 Americans with muscular dystrophies. Among those testifying at the Capitol Hill briefing were: Senator Roger Wicker (R-Miss.), a muscular dystrophy community champion; MDA CEO Steven M. Derks; Parent Project Muscular Dystrophy CEO Patricia Furlong; and Dr. John Porter of the National Institutes of Health.
“The passage of the MD-CARE Act in 2001 was a game-changer for the nation’s muscular dystrophy community,” Derks said. “A premier example of private/public partnership, this landmark legislation leveraged the passion of our heroic congressional champions behind our well-organized and long-established national clinical and research infrastructures and has yielded life-altering research breakthroughs.”
Among the strides that this landmark bill has yielded are research and therapeutic advances in three major forms of MD — Duchenne, myotonic and facioscapulohumeral. The primary focus of the briefing was testimony from individuals affected by muscular dystrophy and world-renown clinical and research leaders representing the Sen. Paul D. Wellstone Muscular Dystrophy Cooperative Research Centers, the centers of excellence in MD research that were established through the MD-CARE Act. This discussion highlighted the progress in these three MD types.
“We have made great strides, but the muscular dystrophies continue to be among the nation’s most devastating health conditions,” Derks said. “Today, on behalf of the infants, children, teens, adults and their families we serve, I implore you to keep the life-changing momentum of the MD-CARE Act moving forward by reauthorizing this lifesaving legislation.”
About the MD-CARE ACT
The MD-CARE Act, originally passed in 2001, is up for reauthorization. This Act increased overall government funding for neuromuscular disease research by over 400 percent, from $17 million per year to $75 million.
The original law, called the Muscular Dystrophy Community Assistance, Research and Education Amendments, established university-based centers of excellence in muscular dystrophy research and authorized the Muscular Dystrophy Coordinating Committee (MDCC), an interagency collaboration focused on maximizing muscular dystrophy resources across the government and accelerating treatments and quality- of-life improvements for people living with MD.
The MDCC delivered the MD Action Plan to Congress, which is currently being updated. MDCC comprises experts in the field from federal agencies and patient advocacy organizations. The law also aims to standardize clinical care for muscular dystrophy throughout the U.S. by mandating the development of care standards for each form of the disorder. The goal is to ensure that every MD patient receives optimal care, whether that care is delivered in a major medical center or a small community practice.
For example, the Act provided for the creation of care recommendations relating to Duchenne and Becker muscular dystrophies 10 years ago, and those are now undergoing expansion. It is also responsible for the care recommendations in development for four other forms of muscular dystrophy — congenital, facioscapulohumeral, limb-girdle and myotonic — that will be released at the end of 2014.
“These care guidelines ensure that optimal and consistent care is available to anyone living with muscular dystrophy anywhere in the U.S.,” says Annie Kennedy, MDA’s senior vice president of advocacy. “The goal is to empower all patients and clinicians with the best available information in making care decisions.”
Take 5! We urge all members of the MDA community to reach out to their elected officials and tell them that the MD-CARE Act matters to you and your family. Contact them by email, letter or phone to urge them to keep our lifesaving research momentum moving forward by supporting this critical legislation. For information on the Act, and how you can get involved, visit MDA's advocacy pages.
Fun in the Sun: MDA Summer Camp 2014 is approaching
MDA is gearing up for Summer Camp 2014. Whether you want to be a camper or volunteer your time to help out, there is still a chance to get involved.
Jump into Spring: Participate in a marathon for MDA with Team Momentum
Recruitment season for MDA Team Momentum is officially off to the races. MDA’s endurance fundraising programs give runners and walkers access to MDA’s network of resources that include meet-ups, coaching, training and more, both in person and online. Everyone, from experienced athletes to first-timers, is welcome. This year, Team Momentum will host MDA socials for interested participants across the country.
“[MDA socials] are a one-stop shop where people can come and learn more about Team Momentum and secure entry into their favorite sold-out race,” says Alison Tibbits, nationwide director of MDA’s endurance program. “They’ll hear from a staff person, certified coach, volunteer mentor, and meet fellow teammates as well as an honored hero [from the local MDA community].”
To view a listing of MDA socials, visit mdateam.org.
MDA has a limited number of entries into the 2014 Bank of America Chicago Marathon and the Marine Corp Marathon in Washington, D.C. If you’re interested in running in these marathons on behalf of MDA and bypassing the lottery for general entries, visit mda.org/team-momentum.
2014 Team Momentum Races:
Michelob Ultra 13.1 Boston Marathon: Sunday, Sept. 14
Bank of America Chicago Marathon: Sunday, Oct. 12
Marine Corps Marathon: Sunday, Oct. 26
Register today at mdateam.org.
A video originally created for an MDA Black and Blue Ball by Pennsylvania-based video production company Kaneff Productions has since found a much wider but equally receptive audience on YouTube.
The nearly 15-minute video features the story of two young boys with Duchenne muscular dystrophy (DMD) — 12-year-old Stanley Kocyba (pictured) and his friend, 8-year-old Kenny Frost — and gives a glimpse into their daily activities and family lives.
The video, titled 2013 Muscular Dystrophy Documentary, offers a sense of what it’s like to be a young child with DMD or a parent of a child with muscle disease. From having fun at a Muscle Walk to showing the effects of a drug trial that Stanley was involved in, viewers witness the physical and emotional challenges these families face as they deal with this disease on a daily basis. Of course, that was the goal.
For Renee Kocyba, Stanley’s mother, and her family, the decision to put their story out there was an easy one. “This is a disease that needs to be noticed and needs to be taken care of,” says Renee Kocyba. “It’s such a small population compared to [other diseases] like cancer or AIDS, and it just needs to be more known. We’re everywhere, and it makes a difference. Without awareness, you can’t raise money, and that’s what we need,” she says.
Natalie Frost, Kenny’s mother, said she had a quick moment of hesitation before agreeing, but that ultimately she is willing to do just about anything to get the word out. She is proud of the video, but watching it still gets to her. “I cry every time I watch it, but sometimes I just have to watch it. It’s part of our life,” says Frost.
Both families have seen a groundswell of support since the release of the video in late 2013. Stanley’s father, Stan Kocyba, has shared it with co-workers and seen the emotional and fundraising impact firsthand. “They were shocked to see exactly how bad this disease is; it’s heartbreaking to a lot of them,” says Stan Kocyba. “It’s helped us a lot with our fundraising because it drives [people’s] ambition toward research and everything else.”
Getting the Word Out: MDA helps Mike Kaneff take his personal cause nationwide
Mike Kaneff of Kaneff Productions made his first documentary about muscular dystrophy in 2006 when he was still in high school. Inspired by his mother, who has a form of the disease, he has made a new film dedicated to MD awareness every year since, and usually premieres them at his local MDA Black and Blue Ball. Thanks to the advent of YouTube, and the endorsement of MDA, Kaneff’s videos have been reaching a larger audience.
“This last video [about Stanley and Kenny], when I made it public, it went for about two weeks before MDA posted it on their page. It literally went from 11 views in a week and a half to 1,000 in about 10 or 15 minutes on the morning they posted it,” says Kaneff. “[MDA] is phenomenal; they obviously have the same goal as I do, which is to find a cure.”
Learn more about volunteer and fundraising opportunities by contacting the local MDA office in your area at (800) 572-1717.
Saving for School: The ABLE Act removes restrictions on tax-exempt savings accounts
If passed, the Achieving a Better Life Experience (ABLE) Act will make it easier for the parents of children with disabilities to start tax-exempt school savings accounts — similar to 529 accounts — on their children’s behalf. Currently, if a person opens a 529 or other type of school savings account in a child’s name, that money counts against the child’s disability benefit eligibility. Because of this conflict, parents are unable to save for their child’s future schooling.
“This bill opens up all new possibilities for families as they plan for their children’s futures. The existence of ABLE accounts would allow families to have a savings account in their child’s name without being afraid that they won’t be eligible for critical benefits,” says Annie Kennedy, MDA’s senior vice president of advocacy.
Looking at the list of activities that 30-year-old Josh Cranfill, of Burlington, N.C., is involved in, you would never assume that he received a diagnosis of spinal muscular atrophy (SMA) when he was just 14 months old. Cranfill has always been a competitive person, and he’s used his passion for sports to overcome obstacles throughout his life. “Most of the obstacles I have faced were due to my physical limitations,” writes Cranfill in an email to Quest. “I am a firm believer that if there is something I want to do, I find a way to make it happen.”
And make it happen he does. Cranfill serves as a coach for his local high school football team, doling out strategy and life advice in equal parts to his players.
“All my life, I’ve watched sports, so I understand each sport more than the average fan, because I look at it strategically rather than from a player’s perspective,” he continues. “After a few years of going to games and talking football, I realized that I had a message that I could offer the football team that was more than just the X’s and O’s, but about life and how to approach the adversities of life, both on and off the football field.”
Cranfill also uses his strategic thinking in one of his other passions: poker.
“When I play poker, it is my mind against my opponent’s mind; physical strength is not a factor,” he writes. “Poker allows me to compete on an even playing field.”
Due to his mental toughness and experience with the game, Cranfill has played with some of the best poker players in the world and has even been featured in the highly regarded poker publication PokerNews.
Between football coaching, poker and working as a Web designer, Cranfill still finds time to play a large role in the North Carolina Electric Wheelchair Hockey Association, where he is head coach of the Carolina Fury and vice president of the organization.
“Through PowerHockey, we will educate the people of North Carolina on the abilities of disabled athletes,” he writes. “Although we are a competitive program, winning on the scoreboard is only one of our goals. We want to reach as many people as possible.”
Cranfill’s personal motto is to “never give up,” and he lives by that every day.
“Every day is important, and I try to not take time for granted,” he writes. “I fill my days with my many passions to make my life more enjoyable.”
A Place to Share: Transitions Center blogs make an impact
A recent post by MDA Transitions Center blogger Mindy Henderson, titled Confessions of a Muscle Affected by a Neuromuscular Disease,” garnered almost 100 shares on Facebook and close to 1,000 likes in the days after it was originally posted. For the past few years, MDA’s Transitions Center blogs have showcased the voices of individuals like Henderson across the MDA community
“[The blogs] are a great resource for young adults, but we’ve also heard from children and parents that the information provides hope for them,” says Michelle Morgan, MDA’s senior vice president of health care services.
To read Mindy Henderson’s piece and much more, visit MDA's Transitions website.
Off the Shelf
Check out these new books featuring stories for, by or about people with neuromuscular diseases:
What Are the Odds …
By Carole Cotler and Linda Collins
A memoir of author Carole Cotler’s years spent caring for her two sons with muscular dystrophy.
Litany of Secrets
By Luke H. Davis
The first in a planned series of mystery novels featuring Cameron Ballack, a detective with myotubular myopathy, a disease shared by the author’s 15-year-old son, Joshua.
By Amy Harmon
A coming-of-age story that features a supporting character who has Duchenne muscular dystrophy. That character is loosely based on Aaron Roos, a member of the MDA community from St. George, Utah, who has DMD.
Find these books in a bookstore near you or through an online retailer like amazon.com.