Reflections from MDA’s New CEO on the Eve of the Show of Strength Telethon

August 31, 2013

The MDA telethon is an American tradition.

Families grew up watching it, many huddled around black-and-white TVs. People went to local television station studios to staff phone banks and share gripping stories of hope and hurt. Newspapers and magazines put an MDA family member on their front covers. We laughed. We cried. We sang. We ate popcorn and stayed up all night, knowing we were doing something special. We embraced loved ones grateful for the health we enjoy.

Certainly, as I have traveled the United States in my first year at MDA visiting families, our clinics, research labs, summer camps, our sponsors including America’s fire fighter heroes as well as attending MDA fundraising events, I have had the privilege of listening to stories and reflections about their very own special telethon memories. It has been a humbling experience.

Sunday will be my first telethon as the new staff leader of MDA. To say I’m excited for us to tell the MDA story of progress as well as present powerful, inspirational stories is an understatement. I can’t wait for Americans to see the remarkable and real new treatments being used today and on the horizon that they helped create through their generosity. I can’t wait for America to get to know more ordinary people who are doing extraordinary things. If you tune in, you will meet 32-year-old Ben, his wife and young daughter and learn about his fight with ALS, or Lou Gehrig’s disease. If you tune in, you will meet a vivacious, 8-year-old Reagan and her parents Jenny and Joe as she pursues her passion. And, you will meet a handful of others who will courageously tell their stories of strength on national television on behalf of an estimated 1 million Americans battling to overcome life-threatening muscle diseases. They want you to know them and their stories. If you watch, I promise you will be inspired and moved.

Where would MDA and the fight against more than 40 muscle diseases be without the amazing Jerry Lewis? Certainly, we would not be at this hopeful spot. Forever he will be our greatest “muscle-maker,” a true hero in the hearts of millions. He and all of our sponsors, and thousands of celebrities as well as millions of generous Americans who said "yes" to him, brought our fight into America’s living rooms. And so many individuals and organizations joined together to help: fire fighters asking motorists at street corners to fill their boots; retailers asking shoppers to make a donation; little girls and boys asking neighbors to show up at their backyard carnivals, and on and on.

Few of our families and donors make it on the telethon. But every family and supporter we meet inspires us. Most work quietly in communities not seeking the limelight, just wanting to help. We call it "making a muscle, making a difference." The simple gesture of making a muscle, which you can do at, gives us strength and signals that you are with our families and with us in this fight, shoulder to shoulder. The best of humanity!

We know the best way to honor Jerry Lewis and all of the past supporters on whose shoulders we stand today is to work harder and race faster to find new treatments and cures for our families. Our sights are on muscle health as we fund new science, assist families with lifesaving help and medical care, and rally communities to fight back.

Thanks to Americans saying yes to Jerry Lewis' requests and the requests of all our sponsors and volunteers, new, lifesaving breakthroughs are not only on the horizon they are being injected into people today. In fact, more new muscle disease-fighting drugs are expected in the next five years than in the previous 50 combined. Thankfully, because of the support we have received and the support we have been able to provide, "Jerry’s Kids," as we used to refer to children with these diseases, are growing into adults — living longer and staying stronger. In many cases, they are raising their own families, pursuing careers and living independently. That’s progress that YOU helped deliver.

But, our work is not done. There is still too much suffering, death and hardship associated with these diseases. We won’t stop till we find better treatments and cures. We want people out of wheelchairs and enjoying muscle health and strength.

This week we held 100 Show of Strength Telethon Premiere Parties in communities across America. Thousands of our families and supporters turned out to get a sneak peek of our show. We spoke of the hope and urgency we feel. One young boy, fresh from a marvelous one-week experience at our MDA summer camp, heard us talk about our desire for cures. He asked our staff leader, "If you find a cure, can I still go to summer camp?" What an amazing, simple affirmation and tribute to all of you who help fund our life-enhancing work on the ground today while we also invest in discovery for tomorrow.

On behalf of our Board of Directors, volunteer leaders, staff and all of our remarkable nationwide and corporate partners at MDA, our heartfelt thanks to all of you who have brought us to this very hopeful time as well as inspired us to redouble our efforts. I invite you to join us on the ABC network Sunday night, to be inspired, to give generously, and to engage with us as we fight on. Thank you for "Making a Muscle and Making a Difference."

Steven M. Derks
MDA President and CEO