For the next three days, articles will be coming from Maria DiLalla in the MDA office. If you have any questions you can contact the MDA office at 3401.office@mdausa.org or (919) 783-0222.
Once upon a time, there lived a man named Jerry. Jerry was an inappropriate, musically inclined comedian. But Jerry was not a bad guy, and in fact, Jerry had a big heart. So big, he wanted to help an organization with a very long, funny name that few people took the time to understand. No one knows why Jerry wanted to help this peculiar organization, but back in 1955 he hosted the first Telethon at Carnegie Hall.
Jerry has never missed a Telethon. He is the organization’s “number-one volunteer” in spite of all the skeletons in his closet and his near death appearance. Monday’s Telethon featured jump-roping tweens, flamboyantly dressed ladies, and a 21-year old Billy Gilman crooning. Jerry appeared throughout the day, fragile yet sincere, standing/sitting/scooter-ing on the Las Vegas stage.
For 20 minutes each hour, the live national broadcast would cutaway to the local networks. For these 20 minutes, the Raleigh audience was brought to the CW22 Highwoods Road studio for the local phone banks, check presentations and stories. The primary-colored set hosted the local phone bank with a dozen volunteers ready to answer the phones to take local donations. Even with a few blunders, the talent was wonderful and endearing.
And then there were the stories: the little boy, so full of life and personality but only has 8 more years to live; the family that raised over $11,000 for one event simply by asking people to give a little; the mother who lined her phone bank seat with images of her beloved son who passed away in August, 3 days before his first birthday; and then learning about the research, the break-throughs, the hope that is ACTUALLY out there! When you listen to these things, the checkered-past comedian, the 1970s TV set, and the gaffes really did not matter.
I spent my day checking in talent and volunteers, directing people to the commissary and answering questions. I had the best job that day because I spent time with the families. I watched the Telethon through their eyes, because for one day a year, the country is watching and Muscular Dystrophy is not some strange, long word anymore. For one day, others learn about what these families face on a regular basis.
I sat with a woman named Faye. Her daughter and her husband both have MD. She knew that because of the Telethon, she could say the words “Muscular Dystrophy” and her daughter’s teachers would understand. For her, the awareness created by the imperfect event has been a gift. Her daughter found a place where she belongs and a place to build confidence. The tears in her eyes reflect why we do this, why we volunteer our time, why we donate money, why we care.
For centuries people with a disability were shoved under a rug, forced to hide, and lived (if you can actually call it that) their life in shame. People did not want to learn about a multiple-syllable phrase, like Muscular Dystrophy, nor did they want to take the time to understand how they could help. But once upon a time, there lived a man named Jerry…
