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President Signs MD-CARE Act Amendments Into Law

Posted by PPMD on September 26, 2014 at 4:30pm 0 Comments

Capping a two-year advocacy campaign led by Parent Project Muscular Dystrophy (PPMD), today President Barack Obama signed the MD-CARE Act…

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Follistatin Gene Therapy

Started by Kenny Chuck in Research. Last reply by Kenny Chuck 7 hours ago. 1 Reply

Pfizer Myostatin Inhibitor&HT-100

Started by Moein in Research. Last reply by Andrew Kerr on Sunday. 8 Replies

exons 3 - 7

Started by James in General Discussion. Last reply by Debbie Schneider on Saturday. 20 Replies

Deflazacort--Let's discuss

Started by Michele in Steroids. Last reply by Trinh Nguyen on Friday. 4 Replies

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Kenny Chuck replied to Kenny Chuck's discussion Follistatin Gene Therapy
"who knows more about follistatin Gene Therapy?"
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Kenny Chuck posted a discussion
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Ann Martin commented on Patty Sherman's group Carrier Moms
"Hi Lauren, Thank you for sharing you story.  We are actually in the midst of planning a carrier campaign, to focus more on carriers and your specific needs and concerns.  Please stay tuned!  If you are not already registered on…"
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David's Control Knobs

"I would like to invite everyone to checkout David's story at www.davidscontrolknobs.com you will find over 100 designs of hand carved items that are made to go on electric wheelchairs controls. Thanks and if you need to ask any questions you…"
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sue thomas posted photos
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Profile IconParent Project Muscular Dystrophy via Facebook
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Dr. Janet Woodcock, Director of FDA's Center for Drug Evaluation and Research (CDER) is presenting the opening keynote at NORD's Rare Diseases and Orphan Products Breakthrough Summit in Washington, DC today. Her remarks focused on how the patient advocacy community can most effectively accelerate therapy development along the drug development continuum. PPMD is excited to engage in these important sessions and will be sharing highlights with you! #NORD2014

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Profile IconParent Project Muscular Dystrophy via Facebook
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We are honored to be included in the 2014 Rare & Orphan Advocacy & Research (ROAR) Awards shortlist for the Outstanding Patient Advocacy Award! This list is taken directly from peer nominations and so are a great reflection of the rare disease sector successes in the past year. The winners will be chosen by a peer-nominated judging panel and announced on day two of the World Orphan Drug Congress, running November 12-14. Check out the full ROAR Awards shortlist below!…

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Terri Lawrence joined Lisa Jones's group
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Cincinnati Children's Hospital Medical Center

For families who take their children to Cincinnati Children's Hospital for DMD/BMD  medical care.See More
yesterday
Terri Lawrence favorited Susana Arroyo's discussion Cardiomyopathy/Heart Failure - Left Ventricular Assist Devices
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FACES of New Jersey

FACES of New Jersey- Families Advocating, Connecting, Educating and Supporting
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Profile IconJack Thomas Ryan, Munozhat, Christian Girard and 4 more joined PPMD Community
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Profile IconParent Project Muscular Dystrophy via Facebook
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Scholarship Opportunity! AAHD is accepting applications for the AAHD Scholarship Program (2014-2015) which supports students with disabilities pursuing higher education in a field related to disability and health. Preference is given to students who plan to pursue undergraduate/graduate studies in the field of public health, behavioral health, epidemiology, health promotion, disability studies, to include disability policy and disability research. Scholarships are limited to under $1,000.…

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Sherri Looper commented on PPMD's group Duplications
"Hi Char. I don't have a son but an 11 year old daughter with duplications 8-17. Mobile, but trips and falls a lot, uses a stroller for long distances, is slower and weaker than her peers."
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Trinh Nguyen commented on Patty Sherman's group Carrier Moms
"Dear Lauren, Take care and thanks for sharing. Trinh"
Monday
Ana replied to Char Burke's discussion Calling all duplications - and checking in on status of where our guys are at in the group Duplications
"1) Austin has Duplication 53-60 2) Non-mobile, wheelchair all the time.  Can still eat and drink on his own but does need help dressing and washing hair.  3) Austin takes Lisinopril, Carvedilol, and Spirinolactone for heart meds (heart…"
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