News and updates from the MDA community
Featured in this issue: Muscle Walk in full swing across the country; anti-bullying advocate with Friedreich's ataxia publishes new book; MDA Clinical Conference to be held in March; MDA Team Momentum hits the ground running; Shamrocks program raises millions for the cause; MDA Art Collection achieves milestone; accessible playground database now available; Muscular Dystrophy Coordinating Committee works to expand, strengthen and coordinate MD research and care efforts; and MDA's board chairman advocates for newborn screening.
Walk On: MDA Muscle Walks raise funds and connect MDA families
The combined MDA Muscle Walks across the country in 2013 raised more than $3 million to help fight muscular dystrophy, ALS and related diseases. Since 2011, MDA has sponsored these walks in order to bring together families and communities affected by neuromuscular disease. “It’s a way to get together and meet the entire extended MDA family, while helping MDA,” says Scarlett Marchman, MDA vice president of business development.
Last year, more than half of the Muscle Walk participants were family teams, like Tampa Bay’s Lotts 4 Muscles team, led by Darla and Diana Lott, twins with facioscapulohumeral muscular dystrophy (FSHD). Their team raised $3,339 in donations.
Joining Lotts 4 Muscles and the other Muscle Walk teams is as simple as creating a team of your own and joining a scheduled walk. Any funds raised will help fight neuromuscular diseases, and teams only need to raise $250 to be a part of MDA’s Circle of Strength. “This program highlights people who are truly committed to the cause,” says Marchman. Each Circle of Strength member receives a personalized thank-you letter from an MDA family. The MDA Muscle Walk website has step-by-step instructions on how to get started and register a team. After you sign up, it’s time to get out there and start fundraising. Marchman’s advice for that step: “The bottom line is don’t be afraid to ask. Most people are waiting to be asked to help.”
Learn about Muscle Walk families and how you can join them by visiting mda.org/family.
An Inspiring Tale: Meet Gabrielle Ford, an anti-bullying advocate with Friedreich’s ataxia
As a follow-up to her 2009 autobiography Still Dancing, Gabrielle Ford’s new book Gabe & Izzy: Standing Up for America’s Bullied (Penguin Young Readers Group, 2014) details how she was inspired to become a national anti-bullying activist after bringing a new pet into her life. After getting her long-eared coonhound puppy Izzy, the dog developed a condition similar to Ford’s own Friedreich’s ataxia (FA). This experience caused her to take on her current mission of speaking against bullying in schools and communities across the country.
Find Gabe & Izzy: Standing Up for America’s Bullied at bookstores and online retailers when it’s released March 13.
Optimizing Care: MDA’s Clinical Conference brings the latest information to your physicians and clinic team members
As part of its annual conference series, MDA will host its 2014 Clinical Conference this March in Chicago. The primary audience for the Conference will be MDA clinic physicians and team members, including nurses; genetic counselors; social workers; and respiratory, physical and occupational therapists.
Attendees will learn about recent advances and current trends in the diagnosis and medical management of neuromuscular diseases, and receive the latest information regarding development of therapeutic strategies and clinical trials. “The goal is to create a forum to facilitate the exchange of information and ideas that will ultimately lead to optimizing care, and in doing so improving quality of life and increasing life expectancy,” says Valerie Cwik, M.D., MDA’s executive vice president and chief medical and scientific officer.
This conference allows physicians and allied health professionals who attend to bring home the latest information about diagnostic strategies, disease management, acute and specialized care, and more. “By gathering and hearing the latest in the field, they’ll be able to return and apply this information in their local communities and MDA clinics,” Cwik says.
In addition, for the first time, a special evening event is being offered for MDA families to hear from some of the conference speakers. More information on this event can be found in the coming weeks at mda.org.
For more information on the MDA 2014 Clinical Conference, visit mda.org/2014ClinicalConference/overview.
The Extra Mile: Team Momentum invigorates MDA fundraising
MDA Team Momentum is a brand new way for people to get involved with MDA. Team Momentum focuses on recruiting walkers and runners of all ability levels to participate in half or full marathons nationwide — all while raising critical funds to support MDA’s mission. “In some cases, people who run marathons or half marathons may have never had exposure to MDA before,” says Alison Tibbits, nationwide director of MDA’s endurance program. “So it’s an opportunity to integrate a new constituency into our realm.”
Fostering more participation in MDA and its mission is really the goal for the Team Momentum program. “It provides a new avenue for families, friends and other MDA supporters to participate, and it’s fun,” says Tibbits. “And with the coaching and inspiration from everyone in the MDA community, it makes those miles more obtainable than you might think.”
To bring all of these new participants into the MDA fold, Team Momentum will provide the very best in training and support. “We’re with them every step of the way,” says Tibbits. When participants first sign up months in advance of a half or full marathon, they are paired immediately with a specialized Team Momentum staff partner to help them get started on their journey. They are assigned a coach to help customize their training experience and a volunteer mentor who can provide additional fundraising support. They are connected to MDA’s mission by being introduced to an individual or family MDA serves. Participants also have access to all the fundraising tools they’ll need to be successful.
Team Momentum is currently recruiting in four markets across the country: Chicago; Washington, D.C.; Boston; and Dallas, with plans to add New York City, Miami and San Diego in 2014. However, runners who don’t live in these areas can still participate through virtual training and support programs offered by MDA. “It doesn’t matter where you live,” Tibbits says. “We’ve had international participants in the past. We welcome anyone who wants to be a part of an incredible team and help raise funds to advance our mission!”
Start your involvement with MDA Team Momentum at mdateam.org.
Lace 'Em Up: What to expect from your Team Momentum coach
The MDA Team Momentum program has expert coaches who are trained in endurance walking and running, carry proper coaching certifications, and are available to our participants throughoutthe country (in person or online). MDA’s experienced coaches are ready to take on Team Momentum members and show them the path to success. Team Momentum coaches help with all aspects of the endurance running experience, including:
MDA Team Momentum members learn all of this through hands-on training during runs and clinics or seminars with the coaches, volunteers and community partners.
Ready to make a difference for MDA? Sign up for MDA Team Momentum today at mdateam.org.
Going Green: Annual MDA Shamrocks program raises millions for the cause
Every year in February and March, about 15,000 grocery stores, convenience stores, restaurants and other places of business participate in the MDA Shamrocks program to raise money to fight neuromuscular diseases.
In 2013, those locations raised more than $23 million by selling shamrock-shaped paper mobiles in increments of $1, $5, $10 and $20. The charge was led by MDA’s largest Shamrocks retailer, Lowe’s Home Improvement, which raised more than $8 million. Cashiers and other employees at participating locations simply ask customers to donate as they’re checking out or paying for goods or services. “So really, the program is based on a dollar or $5 at a time,” says Kim Bruna, MDA vice president of business development.
Raising $23 million a dollar at a time isn’t easy, which is why every bit of help counts. Beyond donating, MDA families that want to get involved in MDA Shamrocks 2014, which begins in February, can volunteer their time. “We need families for everything from stopping into locations and saying ‘thank you,’ to delivering the Shamrocks, to the kickoffs where
we need families to speak to the crowd and explain why helping MDA is so important,” says Bruna. Some families even deliver baked goods to various locations as a way of saying thanks.
Remember, Bruna stresses, joining the MDA Shamrocks program as a volunteer lets you show the businesses raising millions for the MDA cause just how much it means to you and your family.
MDA Shamrocks needs you! Whether it’s visiting a store and saying thanks or delivering Shamrocks, there’s always a way to get involved. To find out how you can help in your community, contact your local MDA office or email firstname.lastname@example.org.
|Reagan Imhoff’s “Fairy of Hope” was the 397th piece added to the Collection.|
A Work in Progress: MDA’s collection of artwork reaches 400 pieces
MDA’s Art Collection celebrated its 21st year in 2013 by reaching a major milestone: the Collection’s 400th piece. Talented artists from seven states — including two former National Goodwill Ambassadors — contributed 11 pieces throughout the year and helped make MDA’s goal of 400 a reality.
The Collection, which exclusively showcases works by individuals with neuromuscular disease, features a wide array of artistic media and styles — everything from traditional oil and watercolor paintings to less conventional digital designs, 3-D collages and even paint applied with wheelchair wheels.
To learn more about MDA’s Art Collection and how you can support it, visit mda.org/about/community-programs/art.
Play It Safe: NPR helps crowdsource an accessible playground database
The prevalence of accessible playgrounds in the U.S. is increasing, thanks in part to the 2010 ADA Standards for Accessible Design, which went into effect in March 2012, making wheelchair accessibility a requirement for any new playgrounds. So, you might ask, where are all these new accessible playgrounds located?
It turns out National Public Radio (NPR) reporters were wondering the same thing. To help answer this question — and to provide families with a resource for accessible playground locations — NPR created the Playgrounds for Everyone accessible playground database. The database is a crowdsourced model, so anyone who visits the dedicated website can add a playground or edit the listed amenities of playgrounds that have already been added by other users. As of November 2013, the site has more than 1,800 playgrounds that you can search by either current location or by keying in an address, city or ZIP code.
Find an accessible playground in your area or add a new one at apps.npr.org/playgrounds.
The 2010 ADA Standards for Accessible Design updated standards for many of the parts that make up a playground. Here’s what NPR’s Playgrounds for Everyone program suggests you look for to determine whether a playground is truly accessible:
Capital Ideas: MDCC coordinates MD research and care
At the 10th meeting of the Muscular Dystrophy Coordinating Committee (MDCC) Aug. 26, 2013, in Washington, D.C., representatives from muscular dystrophy (MD) patient advocacy organizations, including MDA, and representatives from various federal agencies met with the goal of expanding, strengthening and coordinating MD research and care efforts.
The MDCC is a congressionally mandated committee designed to coordinate MD research activities across the National Institutes of Health (NIH) and other federal health programs. The purpose of the 2013 meeting was to bring together committee members to update one another on individual agency efforts and to discuss planning for revision of an action plan for the muscular dystrophies.
Two MDA representatives made presentations to the MDCC: Valerie Cwik, M.D., executive vice president and chief medical and scientific officer, highlighted some of MDA’s research, health care services and advocacy initiatives; and Annie Kennedy, senior vice president of advocacy, spoke about MDA’s transitions program for teens and young adults with muscle disease.
Watch their presentations on the archived videocast at videocast.nih.gov/summary.asp?Live=12679.
Early Detection: MDA’s board chairman advocates for newborn screening
R. Rodney Howell, M.D., a pediatrician and medical geneticist who chairs MDA’s Board of Directors, advocated for passage of the Newborn Screening Saves Lives Reauthorization Act of 2013 (S. 1417) before a U.S. Senate subcommittee Sept. 26, 2013.
Howell emphasized that conditions that can be detected at birth for which there are emerging therapies should be given priority in the review process for inclusion in the list of recommended newborn screening tests; priority review will not reduce the scientific rigor of the review process; and newborn screening reduces the overall cost of illness (sometimes called “burden of disease”) for the conditions involved.
Howell served as the founding chairman of the federal Advisory Committee on Heritable Disorders in Newborns and Children, a panel of experts that makes recommendations to the Secretary of Health and Human Services about which conditions should be recommended for addition to state newborn screening panels, and chaired this committee from its inception in 2004 through 2012.
Under Howell’s direction, the committee developed a Recommended Uniform Screening Panel (RUSP) for testing newborns that now includes 29 disorders.