I’m new to the group. Just wanted to meet other parents or friends. I have a son Anthony, 7 w/DMD. We are getting ready to go to the annual conference for PPMD.
Just looking for chat.
PS Anyone else out there using Protandim? We jsut added it in.
Hi! I am Wheelie’s mom.
We just picked Wheelie up at MDA Summer camp.
Wheelie is now 16, he was diagnosed at 5 years old.
We have not done any medication therapies.
Our doctors feel that once the medications are stopped that the drop in muscle weakness is too severe.
We have never been to a conference for DMD.
Please let me know how it was.
TTFN
How was the PPMD conference? I’m planning on going next year and am anxiously awaiting the info about it. I know it’s along way away but with two kids and not enough money it’ll take some planning on my part. Questions for you: did you make lots of connections with other families? did you learn lots? did you find out details from the website or did they send you info on when where, etc?
Thanks for your help ahead of time
Rebecca
the conference is amazing. I can’t imagine life without it. it’s hard for us to go as well but worth the struggle. We use it to get all the new info and make our plan for the year. I have so many friends from it that I can talk to anytime. we compare notes as well as having someone to call when you’re having a tough day.
You also meet all the Drs and scientists and get all thier personal emails so you can contact them anytime you have questions and they email you right back. You feel completley plugged in to what’s going on. I use them to educate our doctors here so we get everything we need.
Where do you live? Jill
I’m in the San Francisco Bay Area. Thanks for your input on it, it sounds amazing (and maybe like I should have gone this summer!). Where do you live?
Rebecca
I love san Francisco. I used to live in LA. I live in Phoenix now. I have everything from all the conferences. Let me know if there is ever anything you are specifcally looking for and i’ll be happy to hook you up.
Have you ever gone on thier chat board? If you do and you see the PF Chang’s topic- that’s me. I got the PF Chang’s marathon to accept us as an official charity this year. Hwe have a team running. I’ve been rasing money for PTC124 for years.
Here is my son’s website:
www.parentprojectmd.org/goto/Anthony
let me know what you think and tell me more aobut your family.