Anyone who ever spent a Labor Day watching Jerry Lewis and his telethon for the Muscular Dystrophy Association (MDA) has likely noticed its absence. Lewis retired in 2011 after hosting the popular event since 1966. According to the MDA, the annual telethon raised over two billion dollars during its tenure. Two. Billion. Dollars.
When he retired, Lewis sited age and health as contributing factors in his decision. The truth is that less and less people had been watching the telethon for years. As the internet and satellite television spread through the country, people had a multitude of ways to spend their time. The days of the country sitting glued to the telethon had long since passed.
Last summer, the “Ice Bucket Challenge” took the nation by storm, raising an estimate $100 million for amyotrophic lateral sclerosis, or ALS. The general premise was that anyone given the challenge had to either dump a bucket of water over their head or donate $100 to ALS. Social media sites like Facebook and Twitter exploded images of people participating and then challenging their friends and family to do the same.
The highly successful challenge illustrated the changing nature of fundraising. The emergence of social media has likely changed it forever. Enter events like Fargo/Moorhead’s upcoming “Fill the Boot.”
In 1952, Boston couple Charles and Geraldine Crowley watched helplessly as their two sons were diagnosed with Muscular Dystrophy. At that time, treatment options were slim. Desperate to help his children, Charles reached out to a friend who happened to be a fire fighter. Together, they organized a small army of volunteers from area fire squads who went door-to-door asking for donations. $5,000 later, the International Association of Fire Fighters (IAFF) decided to make the MDA their “charity of choice,” and Fill the Boot was born. Since 1954, the annual event has raised over $530 million.
Sue Wiger has been the area director for the MDA office for two and a half years. Her career in the non-profit sector began in 2008 with the United Way. A subsequent stint with the Bluestem Center for the Arts eventually lead her to the MDA. “It is the first time I have been in direct work with families,” she explained, adding that getting to know the children and families her organization helps is definitely the best part of her job.
Muscular Dystrophy is a group of 43 diseases that cause progressive weakness and loss of muscle mass. It is caused when abnormal genes (mutations) interfere with the production of the proteins needed to form healthy muscles. Although there is no cure, a combination of medication and therapy can often help manage the symptoms and slow down the course of the disease. The MDA is a non-profit organization dedicated to the support and service of individuals living with neuromuscular diseases and their families. “The MDA invests more in research than any other non-profit in the country,” Wiger said.
The area’s Fill the Boot campaign will take place September 18-20 at Hornbacher’s stores all over Fargo and Moorhead. From 8:00am – 7:00pm, local fire fighters will be on hand to encourage donations and spread awareness for Muscular Dystrophy. The money raised will help local fire fighters provide medical treatment and support services for people right here in our community.
“100% of money earned stays local,” Wiger assured. One way that money is used is to provide area children with the opportunity to attend MDA summer camp. This past June, over 180 kids from the tri-state area spent a week at Camp True Friends on Maple Lake in Minnesota. According to Wiger, the cost for one child to attend the camp is $800. “Fire fighters like to see how many kids they can send,” she said. Last year, Fill the Boot raised over $24,000.
In addition to sending kids to camp, the money raised also helps with medical costs not covered by insurance. “Every dollar makes a difference,” Wiger explained. “When the dollars aren’t raised, we have to decide what we might have to cut back on.” Equally important is the MDA’s focus on research. According to Wiger, the National MDA office recently allocated an extra $10 million for research. “The more we raise, the more money we have for research,” she said. “The greatest hope is that one day we can find a cure.”
There was a time when many thought talk of a cure a waste of time. Those days may be over. “Doctors and researchers all over the country have been involved and the recurring theme we are hearing is that we can make more progress in the next five years than we have in the last fifty,” Wiger explained.
Of particular interest is a new drug for Duchenne Muscular Dystrophy (DMD), the most common type of MD and the most prevalent in children. According to the CDC, Duchenne effects 1 in 3,500-6,000 male births annually. An effective drug could drastically improve the long-term prognosis for those living with DMD. It could also mean less young people will have to face the reality of being confined to wheelchairs. “If we can make progress with this disease, the trickle down effects could help other neuromuscular disease,” Wiger said.
For the first time, the local Fill the Boot campaign is also accepting online donations, allowing those unable to visit a Hornbacher’s this weekend the chance to participate. Those who would like more information can visit http://www2.mda.org/goto/FMfilltheboot15.
