Hi Michelle,

Thanks for the welcome :) Its nice to hear that you have family here in Monson! Hopefullly we can all get together sometime. We are still adjusting to this diagnosis, But if anyone needs someone to talk to, or wants to get something going locally, like a run, bake sale, (we were thinking of having a yard sale and have all the money we make go to PPMD), or any other kind of fundraiser, please let me know. I find the busier I keep myself, the better I am at dealing with it.

Sincerely,
Scott and Kim

Please note the location for the MGH DMD Parent round table on Saturday, May 2 is at the Holiday Inn in Rockland, MA.

Hello, Michelle
Yes, Adam is an Earnhardt fan! Yes, we have been to Louden twice and don't worry they are very handicap accessible and getting into and out of the races is very smooth going and easy......you get right to the handicap parking area as long as you have the handicap plate or window sign.
Adam was lucky to have met Jr. during the VIP tent visits that the races d o for their fans, Adam. The handicap seating is right there infront of the track behind the fence. The disabled in wheelchairs are admitted for FREE and the aides that attend with him are only charged a small fee.....think when we went in 2004 I paid $65.00 for my ticket, they may have increased it by then. Not too bad of a deal!
I used to live in Newburyport Mass. as a child, and still have relatives in the surrounding area around Newburyport, and even some in New Hampshire!
I am always saying keep the boys active, and out in the public, ADA came about when Adam was a baby and they still need more work to be done in this area. Others need to see how we live and other families live with the disability in their family.

Great hearing from you,
Cheryl

Which Doctor do you guys like Dr Darras or Dr Tseng at MGH? Just curious. Also do we know how many people in the boston metro are who have duchennes?

oh! And Keelan does not have the stop codon, he has missing exons 42-25. I've heard of wonderful things happening with PT-124!

Good to know we can see both doctors. Does insurance usually cover both or only one? Thankfully we have a friend who works with insurance who can help us with the ins and outs that we'll be facing with that soon too.

Michelle:
Thanks for the Welcome, I will check out that group as well. I just recently got back on the internet with the PPMD community after being off for a while. I look forward to talking with you.

Ben

Hi Michelle: I do not live in MA but an fromk there and I have a lot of family in that area. We make visits out that way about every 2 years. My family lives in the North Attleboro area. If you are any where near there maybe our families could meet. We are planning a summer 09 trip. Ben

Thank you so for your support. When things get tough, I think of all the family's out there that are counting on us to prove this works. I also htink of all my dear friends who have boys that PTC124 won't help. But I know if this is successful it will regenerate and fuel the other solutions for all the boys. By the time your son is 6, hopefully this will be a proven interventinand it will be available.