2020 Disney Marathon - Gags Keep Running!!
Dear Family and Friends,
Every year I think, should this be the last? Every year I wonder, are people tired of our request for support? This is my 16th year participating in the Race to End Duchenne at Walt Disney World. On January 11, 2020 Michael and I will run the half marathon in Disney World. 16 years…10 marathons and at least 10 half marathons because of those crazy years of multiple marathons in consecutive days. I think of Michael when I started running and I think of where he is now. I think of where research was then and now. And when I think of those things, I realize I need to keep going. I need to ask for your support because our fight is not over.
16 years ago, the average lifespan of a boy with Duchenne was late teens. Now, because of better care…not treatments, the average is late twenties. Michael is 24 years old. I need to keep running.
Great strides are being made, it’s so true. But the cost of getting a drug from in the lab to the patient is crazy! We would not have the Duchenne trials in the pipeline now without all the fundraising efforts all these years supporting research. I guess what I’m saying is, your financial support is really making a difference. We have 1 approved drug but only for a small percentage of boys and there are many other promising things in the works. This research must continue to be funded for our boys and young men to have a fighting chance.
There is another reason I need to keep running and asking for your help. My motivation, Michael, wants to do it with me. He wants to participate so he can feel like he is helping our cause. This year will be our 3rd run together. It’s difficult but nothing like the difficulties Michael faces every day. He must put so much effort into seemingly simple tasks like eating a sandwich or brushing his teeth. He does so without complaint but instead with a smile on his face and with hope in his heart. He goes through life with the faith that a drug will be found to help him.
I haven’t written much about Duchenne Muscular Dystrophy “facts” like I usually do. What you need to know is that it causes a relentless and catastrophic deterioration in all the body’s muscles. We need to stop that from happening in my son and so many others.
Please donate what you can.
Thank you so much for all your support.
Mike, Suzanne and Michael James
If you would like to make a donation you can do so securely right here on the site.
If you prefer to send it to us, please make it out to PPMD and mail to our address: 205 Lowell Ave. Mt. Ephraim, NJ 08059
All funds raised will benefit Parent Project Muscular Dystrophy (http://join.parentprojectmd.org) and go directly toward researching a cure. Your contribution is 100% tax deductible.