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 […]
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.
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
Annual South Florida Gala of Hope Raises over $1 Million in 6 Years Read More »
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
Help Us Shape the Future Together, and Reach our Goal of $750,000 Read More »
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,
Over 35 Cure SMA-Funded Researchers Contribute to Comprehensive SMA Encyclopedia Read More »
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
Adult Scholarships Offered for the 2017 Annual SMA Conference Read More »
Registration is now open for industry and academic researchers to attend our 2017 SMA Researcher Meeting, which will be held June 29-July 1 at Disney World in Orlando, FL. The SMA Researcher Meeting is the largest research meeting in the world specifically focused on SMA. The 2016 SMA Researcher Meeting set a record, with over
Registration is Now Open for the 2017 SMA Researcher Meeting Read More »
Earlier this year, Cure SMA initiated an insurance coverage and payment policy project, in partnership with District Policy Group. The goal of this project is to help facilitate a favorable public and commercial coverage and payment environment. Launched in anticipation of FDA approval of new SMA treatments, the project will cover the full range of
Cure SMA Launches Insurance Coverage and Payment Policy Project Read More »
The 6th Annual South Florida Chapter Gala of Hope will be held on November 17, 2016, at Ferrari Maserati of Fort Lauderdale, Florida. The event has raised $700,000 over the last 5 years, and organizers Fiorenna Fuentes Israel and Jennifer Miller Smith have set a goal of raising $200,000 for this year’s event. The evening
6th Annual South Florida Gala of Hope Inspires Familes and Supporters Read More »
Cure SMA will be participating in a one-day workshop with The European Medicines Agency (EMA—the European equivalent of the FDA), SMA Europe and TREAT-NMD to discuss, support and advance the development of therapies for the treatment of SMA. The workshop will convene key stakeholders—patients, doctors, industry representatives, researchers and regulators—to take stock of the latest
Cure SMA Joins SMA Europe and TREAT-NMD for Meeting with EMA Regulators Read More »
