PPMD Community

Jennifer Collier joined Keith Van Houten's group

Michigan Families

MD families living in the State of Michigan

3 minutes ago

41 Comments 1 Favorite

Jennifer Collier joined Suzanne Desmond's group

Duchenne MD & Autism Spectrum Disorder

Patients living with DMD & Autism Spectrum Disorder.

4 minutes ago

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StaffHolly Peay favorited PPMD's blog post My BRAVE Story: We don't have time to wait

17 hours ago

StaffRyan Fischer's blog post was featured

Important Updates on the Duchenne Policy Forum

Due to overwhelming interest in PPMD’s Duchenne Policy Forum on December 12 in Silver Springs, MD, registration is now closed. We are at capacity and unfortunately there will be no onsite registration due to space…See More

18 hours ago

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via Facebook

Due to overwhelming interest in our #Duchenne Policy Forum on December 12, we have reached capacity and registration is now closed. Attendees—Please click below for the detailed agenda and important logistical information we have compiled after discussions with the U.S. Food and Drug Administration. If you did not register in time or are unable to attend, we hope you will watch this historical event via our live webcast—click below for more…

18 hours ago · Reply

StaffRyan Fischer posted a blog post

Important Updates on the Duchenne Policy Forum

Due to overwhelming interest in PPMD’s Duchenne Policy Forum on December 12 in Silver Springs, MD, registration is now closed. We are at capacity and unfortunately there will be no onsite registration due to space…See More

19 hours ago

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StaffPPMD posted a blog post

In Loving Gratitude

Guest post by Ivy Scherbarth. Ivy is a Colorado/Wyoming FACES Coordinator for PPMD and mom to Hazel, age 8, and Rain, age 6. Rain has Duchenne muscular dystrophy. Follow Ivy at her blog, Living …See More

23 hours ago

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Andrea Cleary replied to Jason Darienzo's discussion Rare Treatments, Cleared by F.D.A. but Not Subject to Scrutiny

"http://loiter.co/v/doctors-take-a-long-shot-and-inject-hiv-into-dying/ Here is the story if you are interested Jason http://loiter.co/v/doctors-take-a-long-shot-and-inject-hiv-into-dying/ Obviously not the same timeline as dmd, buy I see…"

yesterday

Andrea Cleary replied to Jason Darienzo's discussion Rare Treatments, Cleared by F.D.A. but Not Subject to Scrutiny

"Jason, I posted on FB last week my same concern, about cancer drugs getting the green light while we are stalled at a red. In fact, my post was about a little girl with leukemia not responding to traditional treatments, and the doctors infected…"

yesterday

Jason Darienzo replied to Jason Darienzo's discussion Rare Treatments, Cleared by F.D.A. but Not Subject to Scrutiny

"I not suggesting drugs should have the same rules. However there are similar rules governing drugs for extremely rare diseases. If you look at cancer drugs approved based on the probability extend life by one month.…"

yesterday

Keith Van Houten replied to Jason Darienzo's discussion Rare Treatments, Cleared by F.D.A. but Not Subject to Scrutiny

"Because this is for a medical device. Not a drug. Devices and drugs have different standards and requirements for approvals."

yesterday

Jason Darienzo posted a discussion

Rare Treatments, Cleared by F.D.A. but Not Subject to Scrutiny

How can FDA justify using such regulations for cancer and NOT give the same benefits to DMD Drugs, that have showed to be safe and show "probable" benefit. It seems that Eteplirsen has exceeded the FDA's requirements having gone through phase one & two trial and outperforming Drisapersen on safety. …See More

yesterday

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Rajendra Thapa posted photos

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yesterday

via Facebook

Champion Chocolate or Lochte Lemon Drop? Ryan Lochte has partnered with Yogurtology to launch two exclusive new frozen yogurt flavors with sales benefitting PPMD. Visit your local Yogurtology and support the fight to #endDuchenne by trying out these new flavors today!

Champion Chocolate or Lochte Lemon Drop? Decisions, desicions. See what they chose when Ryan Lochte visited! How do you fill your cup? #majorinawesome

1:18

yesterday · Reply

Rajendra Thapa shared a profile on Facebook