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Latest Activity

MPowell is now a member of PPMD Community
May 25
Lisa Jones joined Gisel Rivero's group

Bereaved Parents

For those who have lost a child.
May 3
Stephen Hain is now a member of PPMD Community
Mar 31
Jeffrey Kopp posted a discussion

Duchenne Boy Looking for PlayStation Buddies to Play Games With

Our 10-year-old son, Liam, would like to find some new buddies to play some games on his Playstation4. He likes NHL 20, Apex Legends, Star Wars Battlefront 2, MLB The Show, Madden NFL 20, Fortnite, Destiny 2, and Minecraft. He's had some run-ins with some older boys (friends of friends) who are sometimes mean, so I thought if he found some other Duchenne boys and siblings he'd have better luck. His PS4 username is TyphoonLiam.Thanks! Jeff Kopp St. Louis, MO…See More
Mar 20
william flannery posted a discussion

Success Stories for exon 52 drug

Has there been any studies on how the exon 52 approved drug is doing?I believe it has been on the market for 3 years .See More
Mar 12
william flannery replied to william flannery's discussion Latest Webinar on Gene therapy
"Have there been any success stories on the Gene Therapy treatment that the 3-4 boys participated in over 3 years ago ?"
Mar 12
Michele Schunemann joined Holly Cahoon's group
Feb 20
Krysti Barszcz is now a member of PPMD Community
Feb 19
Gidget Casiday is now a member of PPMD Community
Feb 12
Jeffrey Matucha posted a discussion

Pinball World Record Fundraiser in San Francisco, April 18th and 19th!

Hi everybody! I'm Jeffrey and I'm going to do something Crazy on April 18th at the Free Gold Watch pinball arcade in San Francisco!I am going to attempt to break the current world record for the longest time playing pinball, and I am using this event as a fundraiser for PPMD!All of the details about this bonkers event are here in my blog post:33 Hours of Pinball. Yes, really!My…See More
Feb 10
Jeffrey Matucha is now a member of PPMD Community
Feb 7
Karen Gabel replied to Lori's discussion Manifesting carriers
"Lori are you on Facebook? I recently joined a FB Group called DMD Manifesting Carriers that is very active. I've learned a lot and they are very supportive."
Jan 29
Lori posted a discussion

Manifesting carriers

My son and I have deletion of 10-16. I am symptomatic. Not sure what to do. I have always been very active. After my son was born I started to experience exercise intolerance in 2003. I work as a nurse and am terrified of not being able to work. Anyone with similar situation? I live in Kalispell Montana.
Jan 27
Ronald Gordon is now a member of PPMD Community
Jan 27
Alton Delane posted photos
Jan 22
Shiva joined Roxanne's group

Outliers - Intermediate between Duchenne & Becker MD

The reading frame rule holds true 90% of the time. There remains those 10% that does not fit dmd/bmd phenotype. There is a 3rd form that may be considered as an intermediate between Duchenne and Becker MD(mild DMD or severe BMD.See More
Jan 15


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