PPMD's Blog – July 2015 Archive (9)

Changes to Deflazacort Ordering Process (via Masters Pharmaceuticals)

Masters now has an increasing supply of Deflazacort (a steroid available to treat Duchenne outside the US). However, due to recent regulatory changes, families should now allow 3…

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Added by PPMD on July 27, 2015 at 4:00pm — 1 Comment

PPMD's 2015 Connect Conference Resources & Recordings - Part 3 (Saturday)

Presentations from Day 3 of PPMD’s 21st Annual Connect Conference in Washington, D.C. are now available for download. If you were unable to attend this year’s conference or if you want to replay a presentation that you found particularly useful, we have been sharing all of the presentations online over the past couple of weeks. Check out the presentations from Day 3…

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Added by PPMD on July 21, 2015 at 12:31am — No Comments

PPMD Awards $70,000 Grant to Talem Technologies as Part of Robotics Initiative

Grant Will Be Used to Support Pilot Study for X-Ar Exoskeletal Arm Technology



Parent Project Muscular Dystrophy has awarded Talem Technologies a grant for over $70,000 to support a pilot study of their…

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Added by PPMD on July 20, 2015 at 10:00am — No Comments

PPMD's 2015 Connect Conference Resources & Recordings - Part 2 (Friday)

Presentations from Day 2 of PPMD’s 21st Annual Connect Conference in Washington, D.C. are now available for download. If you were unable to attend this year’s conference or if you want to replay a presentation that you found particularly useful, we will be sharing all of the presentations over the next couple of weeks. To start, check out the presentations from Day 2…

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Added by PPMD on July 17, 2015 at 11:30am — No Comments

PPMD's 2015 Connect Conference Resources & Recordings - Part 1 (Thursday)

The first batch of presentations from PPMD’s 21st Annual Connect Conference in Washington, D.C. are available for download. If you were unable to attend this year’s conference or if you want to replay a presentation that you found particularly useful, we will be sharing all of the presentations over the next couple of weeks. To start, check…

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Added by PPMD on July 14, 2015 at 9:00am — No Comments

Download PPMD's 2015 Connect Conference Booklet

PPMD’s 2015 Connect Conference booklet contained over 40 pages of information on what’s currently going on in Duchenne research & clinical trials. We encourage you to browse the digital version of the booklet if you were unable to attend. And stay tuned for more research updates as we'll be posting recordings of presentations from the conference over the next few…

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Added by PPMD on July 11, 2015 at 12:00pm — No Comments

Action ALERT: Urge Congress to Vote YES on 21st Century Cures Act

For over a year, PPMD has been working with Congress on landmark legislation called 21st Century Cures. The bill aims to speed the discovery, development, and delivery of therapies for diseases that have an unmet medical need like Duchenne. We have been thankful to Congress for their willingness to meaningfully engage the patient…

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Added by PPMD on July 8, 2015 at 11:17am — 1 Comment

Catabasis Pharmaceuticals Receives FDA Fast Track Designation for CAT-1004 for the Treatment of Duchenne Muscular Dystrophy

PPMD is excited that Catabasis has received Fast Track designation for CAT-1004 and we are proud to be an early supporter of this promising therapy.

Catabasis Pharmaceuticals Receives FDA Fast Track Designation for CAT-1004 for the Treatment of Duchenne Muscular Dystrophy



CAMBRIDGE, MA, July 6, 2015…

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Added by PPMD on July 7, 2015 at 1:30pm — 1 Comment

What Does Independence Mean to the Duchenne Community?

July marks the 25th Anniversary of Americans with Disabilities Act (ADA), 50th Anniversary of Medicaid, and the dawning of a new age therapy development for our Duchenne community. But - as we all know - with new opportunities, come new challenges. As people with Duchenne grow up and grow into adulthood, barriers to 'independence' are found in our federal/ state/…

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Added by PPMD on July 4, 2015 at 12:31pm — 1 Comment

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