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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…"
Friday
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…"
Thursday
Profile IconJanet Bloor and Francisco Torcellan joined PPMD Community
Wednesday
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
Monday
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
Swati favorited Brooke Lyons's profile
Mar 11

Staff
PPMD added 4 discussions to the group 2019 PPMD Annual Conference
Mar 11

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PPMD posted a group
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2019 PPMD Annual Conference

Connect with other 2019 PPMD Annual Conference attendees.See More
Mar 11
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
Donna Swan shared Kathi Kinnett's blog post on Facebook
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
Ashok Sangwan replied to Ashok Sangwan's discussion Anybody with a large deletion?
"Thanks Rahul. We are also giving both Tamoxifen and Steroid, but nothing works for my son."
Feb 20
Jennifer Werle-Wolf is now a member of PPMD Community
Feb 19
Melissa Chamness replied to Claire Diemler's discussion How did you talk to your son about DMD?
"Our sons are both 15 and they are at different stages of how they perceive why they are living unlike other kids.  We have always played it "by ear," as they say or on a need to know basis keeping explanations simple when…"
Feb 13

Discussions

How did you talk to your son about DMD?

Started by Claire Diemler in General Discussion. Last reply by Brenda Higginbotham Mar 9. 6 Replies

Anybody with a large deletion?

Started by Ashok Sangwan in General Discussion. Last reply by Ashok Sangwan Feb 20. 2 Replies

entering the toilet

Started by ahmed Sayed Abdel Gawad in Research. Last reply by Melissa Chamness Feb 13. 1 Reply

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