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 »
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 »
Thanks to you, we raised over $770,000 in the month of December, as part of our annual campaign. The stage is set for historic advances in SMA research over the coming years, and we want to make sure it happens. After quickly besting our original goal of $540,000, we asked you to make history by
Together, We Made History Read More »
Cure SMA has awarded a $50,000 clinical care grant to Rebecca Hurst Davis in the lab of Dr. Kathy Swoboda, for her project focusing on blood sugar levels in SMA. Children with SMA sometimes develop insulin resistance or glucose intolerance, meaning they cannot properly regulate their blood sugar. This project will measure how the blood
During the Annual SMA Conference in Washington DC this past June, the National Institutes of Health (NIH) hosted a workshop on clinical trial design in SMA for drug developers, clinical trialists, and FDA representatives. The National Institute of Neurological Disorders and Stroke (NINDS) used the meeting as a forum to discuss the appropriate outcome measures
NIH Releases Summary of the SO-SMART Workshop Read More »
