Sometimes you wake up knowing a day would challenge your emotions and other times you don’t. Today I woke up just planning to get done what needed to be done prior to the first Rock Against Dystrophy event of 2015 and relax. But the universe said otherwise.
First I read that one of music’s legendary a artists, Ben E King, had passed. And while most people my age don’t know his name they do know his song Stand By Me. I, unlike most, had the honor to meet him and work with him thanks to my involvement with the Muscular Dystrophy Association and the MDA Labor Day Telethon and my Uncle Tony Orlando. Ben was an amazing person and idol to many. To say he will be missed is an understatement.
But the universe wasn’t done closing doors of my past yet. An hour after reading of Ben E King’s passing I received a phone call from the local Muscular Dystrophy Association office with news I somehow news would come but deep down I hoped it never did. That news, now known worldwide, was that the MDA Telethon, something part of this countries Labor Day weekend traditions, was no more.
For as long as I can remember through 2010 my Labor Day weekends consisted of being part of the New York segment of the MDA Telethon. While friends and family were planning barbecues or last minute vacations my family was preparing for a weekend of awareness and fundraising.
As a child I was a goodwill ambassador, in the 1980s a “poster child”, for the Muscular Dystrophy Association. Because of that I was often used on camera to share the stage with various celebrities who came to support the cause, raise awareness, and ask to country to donate to the cause so that a cure for the 40 different neuromuscular diseases that MDA has researchers looking for could be found and individuals with the diseases can be helped.
Throughout that time I had the privilege and honor to work with or meet countless celebrities. Tony Orlando, Frankie Avalon, Jon Tesh, Richie Havens, and Sammy Davis Jr just to name a few. And I also watched many childhood friends lose their lives to these diseases.
My curiosity for TV Production started from being in a TV Studio for 3 days every year because of the MDA Telethon. In the late 1990’s through my final year with the show in 2010 I was part of the production crew, sometimes still used on camera when needed, which meant I upped my own game and added more of myself to the cause.
In 2010 MDA began to change the show. Along with Jerry Lewis and Tony Olando, my family and I were relieved of our duties with the MDA Telethon as a new direction was being taken. And while I will admit it stung, it didn’t upset me because I knew the cause would continue on and I’d still be doing my part through Rock Against Dystrophy.
Now the MDA Telethon is completely gone and I’m reading tons of concerns about MDA‘s future. And here’s some truths. Yes, MDA is not the big fundraiser it once was. Why you ask? Because other charities have formed for various reason claiming they are the ones to donate to and they’re the best researchers and helpers. Those other charities working against MDA towards the same goal has hurt MDA. Plus times are changing and a TV fundraiser, 22-hours or 2-hours, just doesn’t carry the weight it once did and is increasingly growing in expense to produce.
So how do we move on?
First is support MDA directly by donating through their website. Second is only donate to charities who say their proceeds go to benefit MDA, like Rock Against Dystrophy. No matter what you read or hear from other charities the truth is that the Muscular Dystrophy Association is still the leader in research and receives NO government aid. Lastly, spread the word whether it’s verbally or on social media. Keep telling people of all ages about MDA and encourage them to donate, even $1 can be the difference.
As long as I’m still rockin this Earth I will continue my support of MDA. The lights may have faded on the MDA Telethon for the last time but the fight to find a cure goes on and we must keep our lights on until that cure is found.