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Katy Pease is now a member of PPMD Community

Monday

Welcome Them!

Tao Wang replied to Tao Wang's discussion Wait four months to join clinic trial or start with prednisone now

"Thank you Keith and Jill, sorry to hear that your lovely son chase has already been on this difficult path for 10 years! Your words are very comforting. I can't really think about future since I got the news, but knowing that you have…"

Mar 22

Keith & Jill VE replied to Tao Wang's discussion Wait four months to join clinic trial or start with prednisone now

"Very sorry to hear this. I can still vividly remember the 'punch to the gut' when we heard the news about our son almost 10 years ago. However, you've found a great community in PPMD. PPMD recently published a 10-year…"

Mar 21

Janet Bloor and Francisco Torcellan joined PPMD Community

Mar 20

Tao Wang posted a discussion

Wait four months to join clinic trial or start with prednisone now

My son Max was diagnosed with DMD less 2 weeks ago. It was hell to swallow this while keep tracking all relevant information for his treatment. We now face a dilemma and would like to hear your suggestions based on your experiences. Max is 4 and since he has not taken any medication he is eligible for two clinic trials in UC Davis where the medicine in test are supposed to have less side effects - called Vamorolone and Catabasis if anyone came across it. Both trials are for about 1 year. The…See More

Mar 18

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Laura Heaton favorited Keith Van Houten's discussion Special needs financial planning

Mar 15

Tao Wang is now a member of PPMD Community

Mar 12

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Swati favorited Brooke Lyons's profile

Mar 11

StaffPPMD added 4 discussions to the group 2019 PPMD Annual Conference

1 more…

Mar 11

StaffPPMD posted a group

2019 PPMD Annual Conference

Connect with other 2019 PPMD Annual Conference attendees.See More

Mar 11

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Brenda Higginbotham replied to Claire Diemler's discussion How did you talk to your son about DMD?

"My son is 19. He will turn 20 in June. He has DMD. We got the diagnosis at age 6. we have always given him age appropriate answers. There are booklets available on the MDA website that help explain the process in children's terms that I…"

Mar 9

Julie Carlson is now a member of PPMD Community

Mar 8

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Donna Swan shared Kathi Kinnett's blog post on Facebook

Duchenne Respiratory Question: Cough Assist vs. “The Vest”

Mar 5

Shawn replied to ahmed Sayed Abdel Gawad's discussion foldable elecrtic wheel chair

"We've heard the same about the EZ Lite being good for some applications, primarily light use and travel. There's no suspension, so per conversations with an EZ Lite representative and our physical therapy team, it's not suitable for…"

Feb 23