Motion in Scottish Parliament for Action Duchenne - View News Article - Action Duchenne - Fighting for a cure for muscular dystrophy

Motion in Scottish Parliament for Action Duchenne - View News Article - Action Duchenne - Fighting for a cure for muscular dystrophy: "Action Duchenne was highlighted in Holyrood earlier this month thanks to the support of MSP Jim Eadie and grandparent John Miller.

The motion presented in Holyrood was focused on the upcoming Rock 'n' Roll half marathon that is taking place in Edinburgh on 15th April. The motion gained great support by: Stuart McMillan, Jackie Baillie, Angus MacDonald, Dennis Robertson, David Torrance, Kenneth Gibson, John Lamont, Richard Lyle, Nanette Milne, Bill Kidd, Humza Yousaf, Joan McAlpine, Adam Ingram, Mike MacKenzie, Christina McKelvie, Jackson Carlaw, Marco Biagi, Margaret Burgess, Kevin Stewart, James Dornan, Jean Urquhart, Elaine Smith, Maureen Watt, Dave Thompson, Gil Paterson, Annabelle Ewing, Jamie Hepburn.

MSP Jim Eadie and those supporting the event and work of Action Duchenne is greatly appreciated. Good luck and thank you to everyone taking part on the day.

If you, or someone you know, would like to get involved with the Rock 'n' Roll half marathon in April then please get in touch."

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TAKE ACTION! 2012 Advocacy Conference Action Alert

Parent Project Muscular Dystrophy: Email - TAKE ACTION! 2012 Advocacy Conference Action Alert: "We need your help in supporting PPMD's 2012 Advocacy Agenda.

Whether or not you were able to join us in Washington, DC for our 2012 Advocacy Conference, now is the time to make your voice heard. As always, we aim to preserve critical funding for Duchenne research and education programs. "

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PPMD Announces Board Approved FDA Policy - PPMD Community

PPMD Announces Board Approved FDA Policy - PPMD Community: "At this time, Congress is working on writing a critical FDA related bill called the Prescription Drug User Fee Act (PDUFA), and PPMD is working with other rare disease advocates on provisions to benefit our sons. Earlier this year, the PPMD Board of Directors adopted a policy position that, among other things, seeks to ensure the potential benefits of a therapy are weighted appropriately against possible risks.

PPMD is working now to develop a specific legislative provision or provisions that would advance these core principles, and will be committed to working this issue as Congress writes its FDA bill over the coming months.

Please take a moment to read this policy. We cannot stress enough how important it is for your family, for every Duchenne family and organization to understand this topic, as it will most definitely impact how quickly treatments are available to our sons."

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Parent Project Muscular Dystrophy Awards $500,000 to Tivorsan Pharmaceuticals -- HACKENSACK, N.J., Feb. 21, 2012 /PRNewswire-USNewswire/ --

Parent Project Muscular Dystrophy Awards $500,000 to Tivorsan Pharmaceuticals -- HACKENSACK, N.J., Feb. 21, 2012 /PRNewswire-USNewswire/ --: "Dr. Justin Fallon of Brown University, the founding scientist of Tivorsan, was the recipient of PPMD's first End Duchenne Grant in 2008. Building on that work, the Tivorsan team seeks to use recombinant human biglycan (rh-BGN) to increase utrophin at the muscle cell membrane, resulting in reduced muscle damage and improved function."

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Ataluren update

Ataluren update - View News Article - Action Duchenne - Fighting for a cure for muscular dystrophy: "PTC Therapeutics is actively involved in preparations for initiating an open-label study for patients with nonsense mutation Duchenne/Becker muscular dystrophy previously treated with ataluren at sites outside the U.S. "

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JumpStart Invests $250,000 in Milo Biotechnology -- CLEVELAND, Feb. 14, 2012 /PRNewswire/ --

JumpStart Invests $250,000 in Milo Biotechnology -- CLEVELAND, Feb. 14, 2012 /PRNewswire/ --: "CLEVELAND, Feb. 14, 2012 /PRNewswire/ -- Milo Biotechnology will receive $250,000 from JumpStart Inc., a nonprofit investing intensive business assistance and some capital into early stage Northeast Ohio-based tech companies. A clinical stage startup developing a therapy to increase muscle strength and improve the quality of life of muscular dystrophy patients, Milo is the 61st company in JumpStart's portfolio. "There are limited treatment options for muscular dystrophy and approved therapies are inadequate or can cause significant side effects," says JumpStart's Mike Lang. "Since most muscular dystrophy patients are children, the medical community is interested in a safer and more targeted therapy.""

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SUMMIT OUTLINES CLINICAL TRIAL PLANS FOR ITS DUCHENNE MUSCULAR DYSTROPHY PROGRAMME - View News Article - Action Duchenne - Fighting for a cure for muscular dystrophy

SUMMIT OUTLINES CLINICAL TRIAL PLANS FOR ITS DUCHENNE MUSCULAR DYSTROPHY PROGRAMME

"Clinical Trial Application expected to be submitted in Q1 2012
• Headline results from Phase I study anticipated in Q3 2012
Oxford, UK, 14 February 2012, Summit (AIM: SUMM), a UK drug discovery company, today outlines
its clinical trial plans for SMT C1100, a potential first-in-class disease modifying drug for the treatment
of the fatal rare disease Duchenne Muscular Dystrophy (‘DMD’). "

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