May 2015

15th Annual New England Walk-n-Roll Raises Over $100,000

The 15th Annual New England Chapter Walk-n-Roll was held on Saturday, May 16, at beautiful DCR Wompatuck Park in Hingham, MA. The sun was shining as more than 600 people participated in the 1.5 mile walk. Last year, this event hit a milestone by reaching $1 million raised in its history, and this year has […]

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21st Century Cures Unanimously Passes Committee

Yesterday, the 21st Century Cures bill was unanimously passed by the House Energy and Commerce Committee. 21st Century Cures would overhaul how the Food and Drug Administration evaluates new medical products and provide $10 billion in mandatory funding for the National Institutes of Health. Passage by the Committee is a significant milestone for this important

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Collaborative Ways Cure SMA is Driving Research Results

Much as families in our community often work together to start a chapter, organize an event, or raise awareness of SMA, researchers must work together in order to find the fastest and most effective path to a cure for SMA. In addition to providing funding for ongoing SMA research, Cure SMA provides several opportunities for

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Meet the SMA Family that Helped Inspire 21st Century Cures

In a recent update on the 21st Century Cures Initiative, we shared how the SMA community has helped inspire this legistlation. Chairman Fred Upton has been a guest at our Hope on the Hill Congressional Dinner. He has also formed a strong relationship with Brooke and Brielle Kennedy, two sisters from his home state of

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Cytokinetics and Astellas Release Further Details on Upcoming Phase 2 Trial

Cytokinetics, in partnership with Astellas, has officially announced that recruitment will begin in the second half of 2015 for a Phase 2 clinical trial testing CK-2127107, a muscle activator. This randomized, double-blind study is expected to enroll 75 patients with SMA type II, III, or IV. Patients will be dosed for four weeks, and will

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Cure SMA Joins The Research Acceleration and Innovation Network

Cure SMA has become a participating organization of The Research Acceleration and Innovation Network (TRAIN), a program of FasterCures, bringing the total number of venture philanthropies in TRAIN to 80. FasterCures established TRAIN in 2005 to connect disruptive innovators in the disease research space with the vital resources, tools and relationships to catalyze development of

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2015 Family Friendly Poster Session Presenters Announced

The Family Friendly Research Poster Session is one of the most anticipated events of our Annual SMA Conference. Each year, Cure SMA invites researchers from the SMA Researcher Meeting, which is held in parallel with the family conference, to present their findings to families in way that is accessible to them. During the event, families

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