5th Annual Hope on the Hill Congressional Dinner Advances SMA Advocacy

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This year’s 5th Annual “Hope on the Hill” Congressional Dinner will be held on Tuesday, December 1, bringing together families, government, and industry for an important evening of collaboration. As more SMA drugs reach late stage clinical trials, we remain focused on educating, involving, and engaging all three groups in our community: the patient and

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Clinical and Regulatory Webinar and Extended Q&A Now Available

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A recording of last week’s Cure SMA Clinical and Regulatory Webinar is now available online. WATCH Our thanks again to our three panelists—Dr. Tim Franson, Dr. Tim Miller, and Dr. Tom Murray—for their expertise and for their generosity with their time. Our thanks also to everyone from our community who joined in. We received a

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Fall 2015 Issue of Compass Highlights SMA Researcher Meeting

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The latest issue of Compass, our research publication, is now available online. This fall 2015 issue covers our 2015 SMA Researcher Meeting. The researcher meeting is held each year as part of our Annual SMA Conference. It is the largest research meeting in the world focused on SMA, where about 300 basic researchers, drug developers,

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Cure SMA Medical Advisory Council Meets in Chicago

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Members of Cure SMA’s Medical Advisory Council (MAC) have gathered in Chicago for two days of meetings to set the agenda for the care of SMA individuals and families. Our MAC is chaired by Mary Schroth, MD, a leading pulmonologist, and professor of pediatrics. The MAC is one of the most highly respected bodies of

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Tell Your Senator to Support Innovations for Healthier Americans

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We need your help in contacting your Senators to tell them that legislation promoting innovation and research is extremely important to you and that the discovery of the next generation of cures and treatments for disease needs to start now! We are concerned about Congress’ lack of progress on the 21st Century Cures legislation (H.R.

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Cure SMA Welcomes the North Jersey Chapter

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Cure SMA is pleased to announce the creation of a new chapter in northern New Jersey, serving families and supporters with zip codes starting with 07, 085, 086, 087, and 088. Led by chairpersons Kara Hartnett (family support), Anna Pham (fundraising), and Zainab Jaffar (communications), the chapter is excited to begin helping families throughout their

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Cure SMA and Other Venture Philanthropy Leaders Share Insight at Partnering for Cures Panel

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Cure SMA President Kenneth Hobby was a featured panelist at Partnering for Cures, a conference convened by the Milken Institute’s FasterCures initiative. At the event, over 700 research innovators—including senior government officials, patient advocates, scientists, major investors, industry CEOs and philanthropists—gathered to discuss some of the most common barriers to speeding up innovation in medical

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Cytokinetics Announces New Details on Upcoming Phase 2 Trial

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Cytokinetics, in collaboration with Astellas, has announced further details about a planned Phase 2 clinical trial of CK-2127107 in patients with spinal muscular atrophy (SMA). CK-2127107 is a skeletal muscle activator. The drug has the potential to improve muscle function, either alone or in combination with other drugs. We are excited to see the continued

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Cure SMA Publishes Journal Article on the Patient Voice

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Cure SMA, along with collaborators from Biogen and the SMA Foundation, have published a paper in the journal BMC Neurology. Over the past year, we’ve completed 16 focus group sessions and 37 interviews in the US with 96 participants including: 21 with individuals with SMA; 64 parents of individuals affected by SMA; and 11 clinicians

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Jadon’s Hope Foundation Donates 10 New Tomato Feeder Seats

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Cure SMA recently received a donation of 10 special tomato feeder seats from Jadon’s Hope Foundation. These were immediately sent out to families who were on a waiting list for a feeder seat. Thanks to Jadon’s Hope, these familes no longer have to wait! Jadon’s Hope Foundation was created by Tony and Kristin Burks in

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