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ACTION ALERT: Make Your Voice Heard on New Healthcare Proposal

Posted by Annie Kennedy on March 21, 2017 at 10:00am 0 Comments

“Who’s on first?”

Remember that classic Abbott & Costello routine? Well, trying to track the quickly-shifting healthcare bill has felt much like watching that routine. Complex, confusing, and exhausting. But the stakes here are no laughing matter.

 

We…

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ICYMI, Akashi Therapeutics joined us for a webinar earlier this week to discuss HT-100 and next steps for the clinical program. Akashi CEO Marc Blaustein presented data from the previous clinical program of HT-100, discussed FDA’s recent decision to allow the clinical development of HT-100 to resume, and answered questions from our community. If you missed it, you can now watch the recording of the webinar below.

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Summit Therapeutics announced today that it will proceed with the planned extension phase of PhaseOut DMD, a Phase 2 clinical trial evaluating the utrophin modulator ezutromid, subject to regulatory approval. This follows an interim review of the safety and tolerability data from the ongoing trial by an independent Data Monitoring Committee and its support of Summit’s plans to extend the clinical trial. The proposed extension phase will allow Summit to gather important long term safety…

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Today ReveraGen BioPharma Inc, announced that the FDA has granted Fast Track designation for vamorolone (VBP15) for the treatment of Duchenne. This designation can speed the review of efficacy and safety data for vamorolone in people with Duchenne, potentially leading to more rapid regulatory approval. PPMD is pleased to learn this news and happy to have provided early funding for this therapy. http://bit.ly/2nvTKDB

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Today, PTC Therapeutics provided the following update to the Duchenne community regarding their acquisition of Emflaza™ (deflazacort) from Marathon Pharmaceuticals. We appreciate PTC keeping our community updated during this transition.

Community Update from PTC

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Today, PTC Therapeutics provided the following update to the Duchenne community…

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ANTONIS NIKOLITS replied to Galia Ben Ishay's discussion Tamoxifen
"Hello, My son is suffering from Limb Girdle MD.This topic about Tamoxifen is really interesting because no treatments are underway for his condition. Research was conducted on mdx mice so I don't understand is if this drug targets DMD muscles…"
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ACTION ALERT: Today's House vote to consider a new healthcare bill scheduled for today has been postponed. There is now more time for our community to raise our voices and demand that our priorities are considered as America’s healthcare is shaped. Contact your member of the House of Representatives today!…

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Please join PPMD and Akashi Therapeutics as we host a webinar Monday, March 27 at 1:30 PM ET to discuss HT-100 and next steps for the clinical program. Akashi CEO Marc Blaustein will present data from the previous clinical program of HT-100 and discuss FDA’s recent decision to allow the clinical development of HT-100 to resume, and leave time for discussion and fielding of questions.…

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[Upcoming Webinar] Akashi Provides Update on HT-100 at Online Webinar - Eastern Time Zone

March 27, 2017 from 1:30pm to 2:30pm
Monday, March 27 at 1:30 PM ESTPlease join Parent Project Muscular Dystrophy and Akashi Therapeutics as we host a webinar Monday, March 27 at 1:30 PM ET to discuss HT-100 and next steps for the clinical program.Akashi CEO Marc Blaustein will present data from the previous clinical program of HT-100 and discuss FDA’s recent decision to allow the clinical development of HT-100 to resume, and leave time for discussion and fielding of questions.Speakers:Pat FurlongFounding President & CEO,…See More
Mar 23

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[Upcoming Webinar] Akashi Provides Update on HT-100 at Online Webinar - Eastern Time Zone

March 27, 2017 from 1:30pm to 2:30pm
Monday, March 27 at 1:30 PM ESTPlease join Parent Project Muscular Dystrophy and Akashi Therapeutics as we host a webinar Monday, March 27 at 1:30 PM ET to discuss HT-100 and next steps for the clinical program.Akashi CEO Marc Blaustein will present data from the previous clinical program of HT-100 and discuss FDA’s recent decision to allow the clinical development of HT-100 to resume, and leave time for discussion and fielding of questions.Speakers:Pat FurlongFounding President & CEO,…See More
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Wow...what a week in Washington! President Trump released his budget proposal, the American Health Care Act moves to the floor of the House for a vote today, the U.S. Supreme Court ruled on a landmark case around the rights of students with disabilities within the public school system, and at long last – after months of our Duchenne community’s engagement, testimony, Hill visits, and discussions with Congressional Champions – the User Fee Hearings have begun. But like so…

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