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July 2015 Blog Posts (16)


Staff
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).…

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


Staff
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…

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


Staff
Participate in ABLE National Resource Center Survey

Since the enactment of the Stephen Beck, Jr., Achieving a Better Life Experience Act of 2014 (ABLE Act) in December 2014, PPMD has been working with leading…

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Added by Annie Kennedy on July 20, 2015 at 12:00pm — No Comments

RECALCULATING...

http://www.davidlclick.com/blog/recalculating

Chances are your life will not go exactly as planned. Even with your best, it's a near certainty you will face headwinds, hardships, or obstacles along the way that force you to change…

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Added by Dave Click on July 20, 2015 at 10:54am — No Comments


Staff
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


Staff
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…

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


Staff
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…

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


Staff
PPMD's 2015 Duchenne/Becker Transitions Meeting Recap

“We are the population that was hoped for — and now we’re here.”

- L. Vance Taylor



This statement made by a close friend of mine perfectly captures the spirit that satiated the room at the PPMD Duchenne/Becker Transitions Meeting which took place at…

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Added by Annie Kennedy on July 13, 2015 at 11:00am — 1 Comment


Staff
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


Staff
21st Century Cures Passes House of Representatives!

21 Century Cures. First a bold concept led by two visionary congressionary leaders on April 30th, 2014.

Then innovative ideas poured in to Washington from the world’s best and brightest developers and innovators.

Then lots of Hearings, and roundtables, and Hill meetings, and…

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Added by Annie Kennedy on July 10, 2015 at 11:35am — 2 Comments


Staff
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…

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


Staff
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


Staff
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…

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

YOU ARE YOU...

We have a bedtime routine, Alex and I, a bonding conversation that has happened every night, without fail, since he has been about three years old. It's a tender moment between father and son, one where Alex shares his hopes and fears, and I’m fortunate to see life from an unique perspective. He’ll tell me about a girl he likes or a disagreement with a friend. He’ll tell me about a new video game that’s coming…

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Added by Dave Click on July 3, 2015 at 1:11pm — No Comments


Staff
Revised Duchenne Anesthesia Recommendations 2015

Historically, people with Duchenne have been told that using inhaled anesthetics can cause malignant hyperthermia (“MH”; extremely high body temperature), a condition causing rhabdomyolysis (breakdown of skeletal muscle tissue causing the release of…

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Added by Kathi Kinnett on July 2, 2015 at 10:00am — No Comments

Stress and Divorce: Resources for Parents of Children with DMD

There are many instances and outcomes that parents do not wish to consider.  The first is that one of their children will be diagnosed with a terminal illness, and one where there is no cure.  The loss of a child is a sorrowful event but standing with them as a caregiver in the face of a…

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Added by Todd A walters on July 1, 2015 at 8:00am — No Comments

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