One might think that, after 38 years of Labor Day Telethons, the process might become mundane or almost calculated. On the contrary, this was our second year to go to the national show in person, and it was even more intense than the first.
The talent is so varied that it truly makes the Telethon one of the greatest shows on earth. The performers are generous with their time, volunteering just to help break last year’s record of donations.
And the amazing Jerry Lewis, Telethon star, somehow gets more passionate with each passing year. What you don’t see on TV is his personal reaction to each of the families who appear onstage to share their stories.
He knows it isn’t easy for them to open up during a difficult time in their lives in order to raise disease awareness and funds for research. He’s so touched by the families’ courage that at times we saw him bury his head in his hands in emotion — something not shared on camera. This passion comes from a man who’s defied the odds with his own health for decades and this year was struggling for every breath.
Our point in relaying this experience is to remind you that we don’t always realize who’s fighting for us. In MDA, each of us has an extended family that truly empathizes with what we’re going through.
We believe that all the neuromuscular diseases in MDA’s program must be somehow connected, and we find Telethon a wonderful time to think of others and not just ourselves. It’s also the time of year to remember that there are so many others facing adversity and to learn about ways they stay positive. We’re constantly learning and growing through every person we meet.
How special we should all feel that people care so much about us!
Many of the celebrities we met this year touched us emotionally, and we’d like to tell you about just a few. The beautiful and talented Jann Carl from “Entertainment Tonight” — the Telethon’s wonderful co-host — stole our hearts last year. Before each interview, she’d come over and talk to the family to ease their nervousness about being on TV in front of millions of viewers.
Jann is one of the classiest women we’ve ever met. After staying up for 21-plus hours, she mingled with all the families and took pictures for almost an hour after the show was over.
Another person we were thrilled to meet was Charo. What an amazing amount of energy she has. Her devotion to MDA is obvious from the nearly 25 years she’s performed on the Telethon and assisted the MDA community. When we met her she was very open and easy to talk to although a little difficult to understand!
Someone who especially impressed us this year is 15-year-old recording artist Billy Gilman, MDA’s national youth chairperson, and his managers.
Billy gives us faith in the young people who are our future. The children, grandchildren, nieces, nephews or friends’ children in our lives present us with an opportunity to teach some pertinent lessons, such as enjoying every day, making time to spend with the people they love, meeting new people and allowing them in their lives, along with all the other things we learn about life when we discover how easy it is to lose.
That mission alone can give us purpose that can keep us motivated and help us stay positive when we most desperately need to be. A focus on educating the younger generations keeps us from wallowing in our physical decline. Thanks, Billy, for taking a leadership role along with Mattie Stepanek in delivering these very important messages to our humanity’s future.
The Jerry Lewis MDA Telethon is about education, entertainment, hope and love. It gives us all these things that are essential for our ability to handle the challenge of ALS. And the Telethon lets us know that good people are working diligently to help us — not just on Labor Day but throughout the year.
ALS Living - The Bishops' Perspective 
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