Insights by Ira: From Telethons to Treatments – Decades of Impact

When I think of Labor Day Weekend every September, it truly invokes so many emotions and memories for me! As a 90’s kid from the mid-west, the holiday meant it was the official start to another school year.  It meant that summer was over, and fall was upon us. But growing up, for me and many others in the neuromuscular community, Labor Day also meant the MDA Telethon.

A celebration of connection

Ira making connections at an MDA event.

Historically, the MDA Telethon was hosted and televised nationally while many cities across the USA also hosted smaller, local telethons that ran in concert with the national event. Today, MDA still hosts a telethon in my hometown of St. Louis, an event that has been taking place for as long as I can remember. When I was growing up, we commonly would meet down at Grant’s Farm and partake in the telethon festivities.  These included media interviews, great food, entertainment, and a variety of fundraising activities. For me, the most cherished part of the MDA Telethon was the opportunity to re-connect with all of my friends from the MDA community.

This holiday occasion is near and dear to my heart. And I personally owe the telethon and its memories to one of the people who was intrinsic to the telethons of years past, Jerry Lewis. An icon and legend to me since I was a small boy, Jerry is one of my heroes.

Through his decades of work on the silver screen, stand-up comedic routines, and visionary as an entertainer, Jerry paved the golden Hollywood way for many future stars. And from 1966 to 2011, that same Hollywood star hosted and led the National MDA Telethon.  The annual televised fundraising endeavor helped to raise over a billion dollars during the 7 decades that it ran each Labor Day weekend. The tireless effort, work, and dedication that Jerry and everyone involved with the telethon brought to the community were not only incredible but were also truly impactful. The MDA Telethon raised funding for MDA Summer Camps, advocacy, awareness, and medical research for life-changing treatments for the more than 300 neuromuscular conditions that impact millions of people worldwide.

An opportunity for joy and growth at MDA Summer Camp

The opportunity to attend MDA Summer Camp is one example of how this dedication to raising awareness and securing funding has had a significant impact on individuals living with neuromuscular conditions. This significance is easily reflected in the strong participation of youth at MDA Summer Camp.

Ira enjoying time with friends at MDA summer camp.

During my childhood and adolescence, I attended the MDA Summer Camp in Missouri, which stands out as a formative experience. These camps, held nationwide, offer youth living with neuromuscular disease the opportunity to engage with peers in the neuromuscular community, enjoy outdoor activities, and foster enduring friendships.

Recently, I had the opportunity to visit an MDA Summer Camp in my new home state of Florida. This experience reminded me of previous years spent at camp and the activities that took place there. I would like to extend my sincere appreciation to those who devote their time, effort, and care each summer to facilitate these camps. Their commitment, combined with mission of champions like Jerry, ensures that youth living with neuromuscular diseases are able to participate in enriching summer experiences that help them grow and shine.

Life-changing treatments

The aspiration, determination, and optimism held by individuals affected by neuromuscular disease—and the mission of MDA —remain focused on the ultimate goal of finding treatments for these challenging conditions. In the past decade, significant advancements have been made toward achieving this objective, as evidenced by the introduction of multiple treatment options to the medical field. These treatments have produced a range of outcomes: some patients have experienced increased muscle strength or slower pace of progression, while others have achieved remarkable improvements in regaining mobility.

I have been receiving one of the recent therapies, Evrsydi, since December of 2020.  Based on my personal experience, I have observed encouraging progress. For me, the treatment resulted in improved muscle strength, physical endurance, and energy. These outcomes have allowed me to maintain full-time employment in a demanding corporate environment, operate a modified vehicle, prepare meals independently, and lead an active lifestyle in South Florida. It is my conviction that this represents the outcome Jerry intended—providing many individuals with the opportunity not only to live longer, but to live fully.

Continuing the legacy of giving back

Ira at “MDA on the Hill”

Last year, I was honored to be named MDA’s National Ambassador.  An honor that I’m currently blessed to hold.  A role that has been the gift of a lifetime as it provides me with the opportunity, on a national stage, to showcase strength of character, offer encouragement to those in my community, and celebrate the champions who have done heaven’s work on earth to ensure that those living with neuromuscular conditions truly have an optimistic and beautiful future.

In 2017, Jerry passed away leaving a legacy from his work in Hollywood and unmatched efforts as a pioneer of hope at MDA.  I never got the opportunity to personally meet or thank Jerry for his contribution to MDA’s efforts that have made it possible for me to have a blossoming future. But I’m certain that if we had met, Jerry and I would have shared a grand friendship.

Earlier this year, I did get the great opportunity to meet with Jerry’s eldest son, Chis Lewis, on a picture-perfect afternoon in Miami, at the Miami Jewish Film Fest. As was Jerry, Chris is an amazing man with a heart for the betterment of our society and philanthropy.  We spent the afternoon discussing his legendary father and took in a private screening of one of Jerry’s films, The Bellboy, that was filmed right here in south Florida.  At the end of our time together, I exchanged a warm handshake with Chris and I advised him what I will advise you all today: like Jerry and all of those who have contributed to MDA’s mission to change the lives of those living with neuromuscular disease, you can use your time and talents, your golden key, to open the door of hope for many others.