News and updates from the MDA community
MDA’s families are remarkable. Every day, kids and adults we know and love are living with diseases that take away everyday freedoms — the ability to walk, speak and hug someone dear, and even breathe. MDA is fighting today and every day to give those freedoms back.
MDA’s big-picture perspective on muscular dystrophy, ALS and other life-threatening diseases that limit muscle strength and mobility has allowed us to be part of many significant moments in history — both in the fight against neuromuscular diseases and as part of American culture.
Six decades ago MDA embraced an innovative way to connect with supporters and raise funds by combining the telephone and television, and the MDA telethon was born. Throughout its rich history, MDA’s telethon captured the hearts of Americans and became an iconic Labor Day tradition. With the help of generous celebrities — none more important than the amazing Jerry Lewis — the telethon brought MDA’s lifesaving mission and the stories of our inspiring families to life in living rooms across the country.
As MDA closes its historic chapter on the annual MDA Labor Day Telethon on broadcast television, we simultaneously renew our never-ending commitment to our families, sponsors and supporters, who have been such an integral part of making history with us.
The telethon was once central to MDA’s fundraising and mission programs. As it helped raise awareness, the telethon sparked a new era of philanthropy: Parents taught their children the importance of giving, and corporate partners became engaged and rallied around MDA families. More importantly, courageous families shared their stories of strength and became the real heroes, inspiring us to action.
To honor the telethon’s rich history, MDA has redoubled our efforts to fight harder for our families. We will continue to amplify the powerful stories of courage and strength we see in our families. MDA is launching new digital strategies to engage consumers in ways that bridge the best of MDA’s past with the bright promise of tomorrow.
Many people remember the telethon with fond memories of backyard carnivals and tossing money into a fire fighter’s boot. MDA would not be at this hopeful point in our shared journey to accelerate treatments and cures had it not been for the telethon, Jerry Lewis and an army of loyal supporters.
Together with you, MDA is confident the next chapter will be even more meaningful and impactful than the ones that have come before.
To read more about the enduring legacy of the MDA telethon, read Always Forward for Our Families, a recent blog post by MDA President and CEO Steven M. Derks. There, you also can view a video compilation of telethon highlights and a photo collection of special telethon moments.
|Tracy Beard (center) with his family at teh Dallas Fire Fighter Banquet, where he received the 2015 Barney McKenzie Humanitarian Award.|
Tracy Beard, a fire fighter from Mesquite, Texas, had been involved with and raised money for MDA for years through Fill the Boot campaigns, the joint fundraising effort led by MDA and the International Association of Fire Fighters (IAFF), of which Beard is a member. But it wasn’t until he was diagnosed with ALS (amyotrophic lateral sclerosis) in January 2014 that he truly learned what that support means to people with neuromuscular disease.
According to Beard, his MDA ALS Clinic at UT Southwestern Medical Center and local Dallas MDA office have been immensely helpful to him and his family.
“I go to the clinic every three months, and our liaison there, from the time we walk in until we leave, she’s just great,” Beard says. “She makes sure everything’s taken care of. They’ve also helped my wife, Sherrie, with any questions or feelings she had. To me, that was the most important thing, giving her peace of mind.”
This outpouring of support has inspired Beard to get even more involved with MDA’s cause. When he was asked to speak at last year’s 52nd Annual IAFF Convention, he was apprehensive at first but decided that being able to share his personal MDA experience with his fire-fighting brothers and sisters was too big an opportunity to pass up. Before delivering his address, Beard recalls watching a past IAFF Convention speech by fellow fire fighter Shaun Probert, who lost his own battle with ALS in 2013. Drawing inspiration from Probert, Beard in his remarks focused on the relationship between IAFF and MDA, and on rallying fellow fire fighters in attendance around MDA’s mission of fighting muscle disease.
“I just wanted to make sure I challenged the guys to go out and collect because I’ve seen what all our support can do,” Beard recalls. “MDA has helped other fire fighters in the past and now they’re helping me. What we do by collecting is not just helping MDA, but helping our own people.”
Since the IAFF-MDA partnership began in 1954, IAFF members have raised $561.5 million to help support MDA families. For more information about Fill the Boot and the decades-long IAFF-MDA partnership, visit iaff.org/mda.
As the MDA California Goodwill Ambassador, 10-year-old Zander Vargas has been increasing awareness of MDA all across the Golden State. About four years ago, Zander, who was diagnosed at age 6 with congenital muscular dystrophy, also became the Northern California ambassador for MDA’s Aisles of Smiles program.
Aisles of Smiles is a fundraising program started in 1985 by an employee of Acosta Sales & Marketing whose son had muscular dystrophy. It helps grocery retailers and well-known brands or products support MDA. Partner retailers and brands give MDA a participation fee.
On behalf of the program, Zander has visited numerous retailers and attended an Aisles of Smiles weekend event for the past four years, where he speaks to participating retailers about MDA’s important mission.
“I enjoy getting the chance to show them how much MDA means to me and my family. MDA gives me hope that one day we will find cures,” says Zander, who also attends MDA summer camp, supports the Shamrocks program and even sings the national anthem every year at the Sacramento Muscle Walk.
To date, Aisles of Smiles has raised more than $81 million to help support MDA families like Zander’s all across the country.
|MDA's Louisiana State Goodwill Ambassador Rivers Lacrouts and his family meet with Sen. Bill Cassidy (R-La.; left)|
This spring, MDA families, leadership and MDA-supported researchers visited Capitol Hill in Washington, D.C., to speak with policymakers about the challenges of life with neuromuscular disease and the importance of MDA’s mission to save and improve the lives of children and adults fighting these life-threatening diseases.
“This is part of a concerted effort to make our voices heard in Congress on important policy issues, such as increased NIH funding and legislation that benefits our community,” says Kristin Stephenson, MDA vice president of policy and advocacy. “We want to reach out to congressional leaders and involve our grassroots advocates in those meetings. MDA is fortunate to have an amazing community of patients, families, clinicians and scientists around the country, which allows us to have meaningful impact on public policy.”
On March 12, MDA-supported scientists visited their congressional representatives to discuss their research targeting treatments and cures for neuromuscular disease, stressing the importance of NIH funding to support their work. The scientists also explained how neuromuscular disease affects their local communities and offered themselves as expert resources to guide Congress on related policy matters.
About a month later, on April 16, the current MDA State Goodwill Ambassadors from Tennessee, Louisiana, Virginia and Maryland and their families, along with MDA’s board of directors and executive leadership, made the trip to Capitol Hill to share their stories and emphasize how key legislation and initiatives, such as the Ensuring Access to Clinical Trials (EACT) Act of 2015 and increased NIH funding, benefit people with neuromuscular disease. The April visits marked the first time MDA leadership and Goodwill Ambassadors visited Congress together, meeting with more than 25 offices.
“We want to increase our presence and voice in the policy area,” Stephenson says. “To do that, we need to expand our grassroots involvement — which means including patients and families in our advocacy efforts. No one can deliver our message more effectively than the members of our community, so our focus needs to be on getting the right information and the right tools to those who want to advocate and engage in this exciting and rewarding process.”
For more on MDA’s advocacy efforts and how you can contribute, visit mda.org/advocacy.
On May 8, MDA, together with Harley-Davidson and other sponsors, held the 22nd annual Milwaukee Black-N-Blue Ball at the Wisconsin Center in Milwaukee, Wis. More than 1,300 people showed up for a night of raffles, auctions, dinner and more. In all, the Ball netted more than $900,000 for MDA, making it the most successful Black-N-Blue Ball in the country.
For many attendees, the Children’s Art Auction is the highlight of the Ball. Starting in 2011, this auction became a signature event of the evening after organizers noticed that art by MDA children in the silent auction tended to receive very large bids — and rightly so. Now, the Children’s Art Auction takes place during the cocktail reception before the dinner and live auction. This year, by itself, the art auction raised $41,300, including a $20,000 sponsorship from ATEK Companies.
“Seeing the smiles on the kids’ faces when they see their artwork displayed and their excitement as the bids go up is absolutely the highlight of the evening for me,” says Mark Osmanski, president and CEO of ATEK. In addition to its sponsorship, ATEK also purchased two pieces of art at the auction.
Scott Bucher, president of Traction Factory, a local business development and communications firm, has been attending the Ball since 1999, and in 2006, he purchased his first piece of art by an MDA child artist, Cyrus Procarione.
“When I first encountered his art, it was at a silent auction,” Scott says. “It was just a piece that to me stood out. It was a statement to me of this kid in this situation expressing himself about something that was interesting and important to him.”
Since that year, Bucher has purchased Cyrus’s art every year, spending as much as $12,000 in 2014 — a record for the auction — and $3,700 this year.
“Over time, his art has evolved,” Bucher says. “His style has changed and you can track not only him aging, but him being in a place in time and what was important to him at the time. It’s not [like other auction items such as] a leather jacket or a poker table; it’s very personal and individual.”
While Bucher may have set the record for spending in the Children’s Art Auction, he is quick to emphasize that he is just one of many who support the cause and make the event a success. “I’m one of 1,400 people from the Milwaukee area who put this event as a priority in my life, and in that sense I’m not remarkable,” he says.
Milwaukee Black-N-Blue By the Numbers
To find out more about the events like this one in your community, contact your local MDA office at (800) 572-1717.
On Aug. 1, 2015, MDA and the University of Florida Child Health Research Institute will present the 2015 National Becker Muscular Dystrophy Conference at the University of Florida Health and Academic Center in Orlando. This seventh annual Becker MD conference sponsored by MDA will feature presentations on clinical care, research updates, current clinical trials and living with BMD.
|Westley Groseclose during his home's renovation in 2014|
Like many parents of a child with a neuromuscular disease, Jessica and Dallas Groseclose always knew their 11-year-old son, Westley, who was diagnosed with Duchenne muscular dystrophy (DMD) at age 7, would eventually need a personal space with more accessible amenities than his childhood bedroom could offer. The family considered selling their house and building a more accessible one somewhere else, but they were reluctant to say goodbye to their home in Powhatan, Va., and the surrounding community they love so much. Among their other ties to the area, the Grosecloses are actively involved with their local MDA Muscle Walk and Westley has served as a local MDA Goodwill Ambassador.
So the Grosecloses found a compromise by instead investing in an addition to their house that would make it more accessible for Westley. When they started the project, they thought they would just be putting in the basics, such as a bed and a dresser and some flooring, until they could secure more money to finish the room. But word of the project spread quickly, and soon people from all over the local community were pitching in — donating both volunteer time and financial support to help the family.
Thanks to this outpouring of support, within four months, Westley’s space included a lowered bed; a fully accessible bathroom with a sensor faucet and roll-in shower; an accessible entrance and exit that allows him to come and go on his own; an entertainment space that can accommodate multiple wheelchairs so friends in wheelchairs can hang out, too; and other finishing touches like a fresh coat of paint and new art on the walls.
The response was unexpected and overwhelming, Jessica Groseclose says, and help and donations came in from all kinds of sources.
“Our friend Jason gathered money from friends and family, a local flooring company donated all of the flooring and showed my husband how to lay it so we could do it ourselves,” says Jessica Groseclose. The Grosecloses also reached out to a home-improvement store in the area, which ended up contributing a sensor faucet and a hands-free flush toilet, while a paint company donated five gallons of paint. “We asked for a faucet and ended up getting so much more.”
While Westley had fun watching the transformation of his room from mere idea to reality, the real fun is just beginning as he now enjoys more freedom, independence and privacy in his own space. And although he loves his new entertainment area and the art that adorns his room, the changes he most appreciates are those that give him more mobility and independence.
“I can move around in my room better,” he says. “And my favorite is the new bathroom. It’s a lot easier to use than our old bathroom.”