Thursday, August 13, 2009

MDA Fundrasing

Every year, business people, community leaders, and others are voluntarily arrested and "locked-up." While in custody, they make calls to raise bail money, dollars that are donated to the Muscular Dystrophy Association (MDA). It's a fun day for everyone, and this year my son will be making an appearance at the local lock-up, Jordan's Steakhouse in Ellicott City, MD 21403, to remind the good folks what this event is all about!

To give the effort that meaning that a large organization simply cannot, local families are given the opportunity to write a letter explaining what the organization means to them.

Below is my own.

Be generous with this, but if not with this then with any other cause that you support. Give not from guilt or fear, but give from joy, and give from your heart.

Dear Jailbird,

When I was young, the MDA Telethon was a nuisance that interrupted my regularly scheduled television programs. Later in life, I tried not to make eye contact when walking by as people intercepted asking me if I would be willing to contribute to "Jerry's Kids." More recently, I would hope a quick "No, not today, thank you," would pass without challenge when the Safeway cashier would ask if I'd like to contribute to support MDA.

Just two years ago in July, though, as my wife and I were making arrangements for his seventh birthday party, the phone call came confirming our worst fear: My own son is one of Jerry's Kids.

At age 40, 15 years into my marriage, I learned my 7-year-old son is not likely to live past his early 30s. Joby has Duchenne Muscular Dystrophy (MDA link).

It is cliche, but it is true: there are no words that adequately describe how a family is affected. Every expectation for a normal life is shattered in an instant. But in that instant, too, our family grew: Standing prominently alongside the neurologists, the physical medicine specialists and therapists, the cardiologists and the pulmonary specialists, the geneticists, the nurses, and all the others---and with equal stature---are the MDA representatives, working for the children and for their families, doing whatever it takes to help in every way.

You have undoubtedly seen the list of all of what the MDA does---fighting for the cure on every front all while ensuring the best quality of life possible for these children and their families. They were all just nice words until I personally lost my job and my health insurance, and my wife and I realized the terror that I could not provide for my son's care. The MDA stepped in and removed that burden right away.

We thought that we were alone; we learned that we were not. That is the MDA.

This is not written to saddle you with our own pain and suffering; to the contrary, I want nothing less than for you to have fun and joy in this fund-raising event!!! Enjoy this game knowing that the MDA will do the rest for us. Know that the cause is good, that the dollars are well-spent, and that your effort truly has deep meaning to the affected children and to their families.

You have our undying gratitude as well as our smiles!

On behalf of my family as well as MDA (Maryland, Washington DC, and National)