Started this discussion. Last reply by Christine McSherry Jan 6, 2010. 1 Reply 0 Favorites
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StaffPat Furlong said…
Please let me know if I can be of help. Your family is bsolutely beautiful! I think the good news is that Childrens and Mass General will be doing trials. You might register on www.duchenneconnect.org. It provides the ability to search for information and connects you to clinical trials. Once trials are posted, you will have the opportunity to read details and make decisions about participation.
Sincerely,
Pat
Joanne
One of my boys is Calvin also. He is 12 and I have another boy Jared 9. They both have deletion 3-7. We don't live far from you.
I saw your boy is having trouble with reading. Both my boys struggled. Calvin seemed to finally get better around 3rd grade. Jared is still having trouble and he is in the 4th grade. Do you have an EIP for him yet? It has really helped with Jared. He gets special reading and writting help. We just try read with them everynight after stretches.
Eileen
I think we met on the shuttle from the airport. I'm the one from Vermont. Hope you had a good conference. Joanne
Thanks for joining me here! I can't wait to see you at the beach!
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