Aug 29, 2008

Why I've never been to Dragon*Con...

Years back while searching the internet for conventions I could attend I happened upon the Dragon*Con website. It looked like a lot of fun. It wasn't specific to just one genre I liked, it included just about all of them. I checked the date. Labor Day weekend. Damn. The one weekend each year I have standing plans. So, what could possibly be so important I couldn't miss it? The Jerry Lewis Labor Day Telethon.


I'm pretty sure most of you know already but for those of you who don't, I have Muscular Dystrophy. There are over 40 neuromuscular diseases that fall under the category of MD and my specific type is Spinal Muscular Atrophy. I was diagnosed when I was two and a half and have been dealing with it's effects ever since. I started using a motorized scooter in high school but I still have the ability to walk short distances.

So far, there is no cure. This is something we strive to change each year with the Telethon and we're getting close. My first appearance on the show was while I was the New Jersey Poster Child for the Muscular Dystrophy Association at age 7. I officially opened the New York portion of the Telethon that year and have added to my on-air duties there with each passing year. It was my involvement with MDA and their Telethon that led me on my chosen career path. I studied Communications in college after learning I had a knack for on-camera work and that I really enjoyed it too. In fact, it was due to my appearance on the Telethon after graduating that earned me my current job as a DJ at 94.3 The Point.

Lots of people have grown up watching the Jerry Lewis MDA Telethon but I think it's important now to get a younger generation involved who may not know much about the Telethon or even Muscular Dystrophy itself. If you've never watched, give it a look this year. There's always lots of great entertainment to go along with the education.




Of course, if you have the means I would hope you donate to finding a cure and helping those with MD in their every day lives. The funds raised this weekend will go towards research as well as funding MDA camps around the country and making sure those affected by the disease have the care and the accessibility items they need in their daily routines. I know you probably hear this a lot but any amount you can give is a good amount. 

This year MDA is also doing something a little different to raise money. If you click the picture above you'll see the great variety of auctions going on until September 4. If you can't afford to make a donation I would highly recommend you getting in touch with your local MDA office and learning how you can volunteer. Every volunteer I've ever talked to (and there are a lot) has told me what a great experience it is.

This year will be no different for me. I'll head into an empty New York on Monday where it will look like a veritable ghost town because, for most people, Labor Day weekend is synonymous with vacation. Not for me. Labor Day weekend isn't relaxing, it's when the point is really driven home for me. I spend most of my year trying to forget I've got MD and live a normal life but this will be my 18th year appearing on the Telethon and I'll be 26 this December. Over the years I've seen good people taken by this disease and in my view, Labor Day is a time to get serious and do everything I can to make sure this is the last year I have to spend my Labor Day in a TV studio. We are so close to finding a cure! Some day soon I will be able to attend Dragon*Con and it won't be because they've changed the weekend it's held.

If you're in the NY area and can receive that local broadcast of the Telethon on Channel 9 be sure to watch for me. My taped check presentations from MDA Camp last week will be airing 7:45 am Monday morning and I'll be presenting an award to a good friend of mine live on the show after 5:00 pm Monday as well.

6 comments:

Eric said...

As I stated in your blog on myspace, keep on rocking, and have fun at the Telethon.

Too bad I can't see you in my area!

:)

Randy said...

Definitely a worthy cause! Too bad you won't be able to appear on my TV screen here in Chicago. Guess that visit you'll make here someday will have to be a close second place! ;)

Buehler!! They think he's a righteous dude!

Anonymous said...

Dude you have no idea what you are missing! DragonCon totally ROCKS

Ripp Dee
www.FireMe.To/udi

The Nerdy Bird said...

Thanks so much guys! I'll see if I can get the video after the fact.

Blue Chair Blog said...

Can you record your appearances and post on YouTube? We'd all love to see you.

I echo your comments. I saw many friends from children's camp, taken by MD over the years...but the improvements and milestones made over the years by the tons of dedicated volunteer, has really made a difference.

The Nerdy Bird said...

I don't have the ability to record it myself but I'm asking around now if any of my friends can. Hopefully they can, if not I can try to get the video from MDA themselves after the fact.