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PPMD-Funded Gene Therapy Study Improves Walking Ability in Muscular Dystrophy

Posted by PPMD on October 23, 2014 at 9:00am 0 Comments

Dr. Jerry Mendell of Nationwide Children’s Research Institute recently presented data from a ground-breaking PPMD-funded study demonstrating that a modified virus carrying the gene for follistatin can improve performance on the 6 minute wal…

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Profile IconParent Project Muscular Dystrophy via Facebook
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Recently, PPMD board member, and Duchenne parent, Ellen Wagner, got first-hand experience dealing with the scariness of the enterovirus and rhinovirus when her son Tim fell ill. We asked Ellen to share what her experience was like so that we could learn important lessons in case others in the community deal with a similar illness. Following Ellen and Tim’s story, we have added some helpful information and reviewed some tips to avoid the flu in your household.…

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Kathi Kinnett posted a blog post

Enterovirus

Everyone is well aware that we are in the thick of flu season. Recently, PPMD board member, and Duchenne parent, Ellen Wagner, got first-hand experience dealing with the scariness of the enterovirus and rhinovirus when…See More
13 hours ago
wainaina muiruri posted a discussion
16 hours ago
ameer h. anan posted a discussion

Computer access by mouse (pointing , clicking ) gets hard

I'am a multimedia student so i'am using the computer about 10 hours a day at lest , i don't  use the laptop keyboard for typing ,but with mouse i could typing using "on screen keyboard" in windows.some time even the pressing on the mouse click gets hard especially in winter as a result of cold in my fingers , Iam asking if any one using another devices instead of the mouse ,i see so much devices on the rahap. websites but i can not figure out what wold works in my specific mobility  condition…See More
yesterday
ameer h. anan shared Mike O's discussion on Facebook
yesterday
Profile IconParent Project Muscular Dystrophy via Facebook
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We were honored to host a delegation of Japanese researchers from the Japan Health Sciences Foundation earlier this week! This delegation travels to the US and Europe annually to survey various companies in an effort to understand research technology in biotechnology. PPMD is the first patient advocacy organization to meet with the delegation to discuss our work in research, advocacy, care, and education. It was a great conversation and the delegation was impressed with the commitment and…

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David favorited PPMD's blog post PPMD-Funded Gene Therapy Study Improves Walking Ability in Muscular Dystrophy
Thursday
Andrea Miklus joined PPMD's group
Thursday

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Sharon Hesterlee replied to Kenny Chuck's discussion Follistatin Gene Therapy
"Kenny, here's a link to Dr. Mendell's presentation at the conference this summer: http://videos.parentprojectmd.org/conference14/audio/03_Saturday/S05_Mendell.mp3 "
Thursday

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PPMD updated an event
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Webinar: Efficacy of Catena®/Raxone® (Idebenone) on Respiratory Outcome in Duchenne at Eastern Time Zone

October 15, 2014 from 12pm to 1pm
Efficacy of Catena®/Raxone® (Idebenone) on Respiratory Outcome in Duchenne: Results of the phase 3 double-blind, randomized, placebo-controlled DELOS trialSanthera Pharmaceuticals presented data of the Phase III DELOS trial during a webinar hosted by Parent Project Muscular Dystrophy on Wednesday, October 15th at 12pm eastern. Presenters:Prof. Gunnar Buyse (University Hospitals Leuven, Belgium); PI of the studyThomas Meier PhD, CEO of…See More
Thursday
Profile IconParent Project Muscular Dystrophy via Facebook
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The recording of our webinar with Santhera Pharmaceuticals is now available! Prof. Gunnar Buyse (University Hospitals Leuven, Belgium; PI of the study) and Thomas Meier PhD (CEO of Santhera Pharmaceuticals) presented data of the Phase III DELOS trial of Catena®/Raxone® (Idebenone) in Duchenne.

Efficacy of Catena®/Raxone® (Idebenone) on Respiratory Outcome in Duchenne (Oct 2014)

Efficacy of…

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Profile IconParent Project Muscular Dystrophy via Facebook
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Thank you to Ohio State University Football who surprised us with a $10,000 donation! Check out the video here! #TackleDuchenne #GoBucks

Ohio State Football: Coach 2 Cure MD Donation

Following the Buckeyes' recent Coach 2 Cure MD awareness game and the heart-touching game ball presentation (https://www.youtube.com/watch?v=JkHeUvyH9jE), Oh...

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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) presented the opening keynote at NORD's Rare Diseases and Orphan Products Breakthrough Summit in Washington, DC on October 21. Her remarks focused on how the patient advocacy community can most effectively accelerate therapy development along the drug development continuum. We were heartened to see such close alignment between PPMD's policy activities in recent years – particularly in…

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Achoch Olala is now a member of PPMD Community
Thursday

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PPMD's 4 blog posts were featured
Thursday

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Ryan Fischer posted a blog post

Notes from FDA’s Presentation at NORD Summit

Dr. Janet Woodcock, Director of FDA's Center for Drug Evaluation and Research (CDER) presented the opening keynote at NORD's Rare Diseases and Orphan Products Breakthrough Summit in Washington, DC on October 21. Her remarks focused on how the patient advocacy community can most effectively accelerate therapy development along…See More
Thursday
 
 
 

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