SMA Community Conducts Outreach Visits with Members of Congress

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On November 30, members of the SMA community met with 17 different legislative offices— eight from the Senate and nine from the House of Representatives.  These Senators and Representatives serve on committees important to our community’s goals, including the House Energy & Commerce Committee; Senate Health, Education, Labor and Pensions (HELP) Committee; the House and […]

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Jadon’s Hope Foundation Donates 15 Items to Cure SMA Equipment Pool

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Cure SMA recently recieved a donation of nine special tomato feeder seats and six telescopic ramps from Jadon’s Hope Foundation. The feeder seats and ramps were immediately sent out to families who were on a waiting list for either item. Jadon’s Hope Foundation was created by Tony and Kristin Burks, in honor of their son, Jadon,

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The Lancet Publishes Data from Phase 2, Open-Label Trial of Spinraza (Nusinersen) in Infants

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Today, Lancet published results from the Phase 2, open-label trial of nusinersen (Spinraza) in infants. This trial initiated in 2013, and patients continue to receive the drug.  The results show that infants as young as five weeks old with the most severe form of spinal muscular atrophy (SMA) – a leading genetic cause of infant

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The Miller McNeil Woodruff Foundation Makes a Generous Contribution to Cure SMA

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The Miller McNeil Woodruff Foundation awarded $87,000 to Cure SMA, in order to further research that will lead to a treatment and cure for SMA. Their gift will also help fund continued advocacy and awareness intiatives. The generous donation is made each year by Patrick and Meredith Woodruff, in honor of thier son, Miller, who passed away from

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Cure SMA-Funded Researcher, Chad Heatwole, Publishes Paper on Clinical Trial Outcomes in Adults with SMA

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Cure SMA-funded researcher, Chad Heatwole, and his team, have published a paper, “What Matters Most: A Perspective From Adult Spinal Muscular Atrophy Patients”. This project was a pilot study funded by a grant from Cure SMA, and focused on developing a reliable method for adults with SMA to report on clinical trail outcomes that are

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Annual Congressional Dinner Brings SMA Community Together on the Eve of 21st Century Cure Bill Passage

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On Tuesday, November 29, more than 160 people from the SMA community – including government and industry partners – gathered for the 6th Annual “Hope on the Hill” Congressional Dinner. Several Members of Congress attended the dinner, including Reps. Sean Duffy, Bill Foster, Jeb Hensarling, Bill Huizenga and Erik Paulsen. Other honored guests included U.S.

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Annual South Florida Gala of Hope Raises over $1 Million in 6 Years

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The 6th annual Cure SMA South Florida Chapter Gala of Hope raised a record amount of $310,000 on November 17th. Total funds raised by the gala now exceed $1 million in its six year history. The event was founded and is organized by Fiorenna Fuentes Israel and Jennifer Miller-Smith, in honor of their daughters, Mia Israel and Madison

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Help Us Shape the Future Together, and Reach our Goal of $750,000

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This has been an historic year for the SMA community. On October 28, our pharmaceutical partners at Biogen and Ionis announced that their New Drug Application for Spinraza (nusinersen) was accepted by the FDA. This means we are just one step away from the first FDA-approved treatment for SMA. What’s more, five other drugs are

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Over 35 Cure SMA-Funded Researchers Contribute to Comprehensive SMA Encyclopedia

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Spinal Muscular Atrophy: Disease Mechanisms and Therapy, the first comprehensive encyclopedia of SMA, has been published by Elsevier. Over thirty five of the book’s authors currently are or have been Cure SMA-funded researchers. The book was edited by Chien-Ping Ko, Sergey Paushkin, and Charlotte Sumner. Drs. Ko and Sumner are Cure SMA-funded researchers. Jill Jarecki,

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Adult Scholarships Offered for the 2017 Annual SMA Conference

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Cure SMA is pleased to announced that, thanks to a generous grant from The Dhont Family Foundation, we are offering scholarships to the 2017 Annual SMA Conference for all adults with SMA. The scholarship covers registration for one adult, age 18+, and one aide. Each year, we look forward to reuniting as a community at

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