On Friday, August 22, 2014, the 10th Annual Grant Sheppard Memorial Scramble for SMA was held at Hickory Hills Country Club in Chilton, Wisconsin. This golf event is in memory of Grant Thomas Sheppard, SMA type I. The golfers and volunteers had a fantastic day filled with lots of fun and laughter. Everyone had a […]
10th Annual Grant Sheppard Memorial Scramble Reaches Milestone Year Read More »
Cure SMA has awarded a $140,000 research grant to Francesco Lotti, PhD, at Columbia University, for his project, “Role of Sumoylation in SMN Function and SMA Pathology.” Survival motor neuron (SMN) protein is critical to the function of the nerves that control our muscles. We know that individuals with spinal muscular atrophy don’t correctly produce
Cure SMA Awards $140,000 Grant to Francesco Lotti, PhD, of Columbia University Read More »
The US House of Representatives Energy and Commerce Committee has released the 21st Century Cures discussion document. The 21st Century Cures initiative was created to investigate how the government can help “accelerate the discovery, development, and delivery of promising new treatments and cures for patients.” This initiative is led by Rep. Fred Upton, who also
21st Century Cures Discussion Document Released Read More »
Thanks to our dedicated and amazing chapter leaders, event volunteers, and SMA families, we’re looking forward to an exciting spring events season. Over the next four months, our chapters and volunteers will be hosting more than 50 events—including walk-n-rolls, marathons, galas, golf tournaments, and bowl-a-thons—from Vermont to California. The money raised by our spring events
Cure SMA Spring Event Season Kicks Off Read More »
Matthew A. Halanski, a Cure SMA-funded researcher from University of Wisconsin – Madison, was the lead author on, “Assessing the Needs of the SMA Population,” an article recently published in the journal Sage Open. Drawing on responses from both families and healthcare providers, the article investigated what medical issues are most important to families affected
January 20 is a day dedicated to the social acceptance of disability and to honor the late Annie Hopkins, SMA type II, who is the founder of 3E Love and creator of the International Symbol of Acceptance. Acceptance is created from an Empowered movement that Educates others to Embrace diversity and Love Lifeby seeing beyond
Join Cure SMA in Celebrating the International Day of Acceptance Read More »
Swiss drugmaker Roche has agreed to buy privately-held Trophos. Roche, the third largest pharmaceutical company in the world, will now bring its resources to help move olesoxime forward. Olesoxime is a neuroprotectant being developed to treat spinal muscular atrophy. At the 2014 Annual SMA Conference, Dr. Eric Dessaud of Trophos presented results of a Phase
Roche Buys Trophos to Continue Work on SMA Drug Read More »
Cure SMA has awarded a $30,000 clinical care grant to Deborah Boroughs, RN, MSN, for her project focusing on caregiver training. Individuals with SMA have complex and unique medical needs. However, parents and other in-home caregivers often don’t receive the information and training they need, especially when the individual is discharged from the hospital. This
On Saturday, October 25, 2014, Leo’s Pride and over 600 participants ran and walked a 5K or 1 mile in support of Leo Bugenske and Cure SMA. In addition to the race, they also celebrated Leo’s first birthday with a beautiful cake. From the proceeds, the Bugenskes donated $17,000 to purchase eight EasyS Strollers for
Bugenske Family Donates $17,000 to Cure SMA Equipment Pool Read More »
Audrey Lewis founded Families of SMA, now Cure SMA, 30 years ago. Audrey recognized early on the importance of attracting new and talented researchers to SMA, with the hope that they would commit their careers to developing a treatment and cure for SMA. Cure SMA honors Audrey’s legacy with the Audrey Lewis Young Investigator Award,
Cure SMA Awards $140,000 Grant to Sara Custer, PhD, of Indiana University Read More »
