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 »
The Fall 2014 issue of Directions is now available. Directions, our biannual family support newsletter, builds our community by sharing stories and experiences. Families from all over the world connect with each other through Cure SMA to chat, organize, and share stories, photos, news, information, and—most importantly—hope. This 120-page issue includes: Information on the upcoming
Fall 2014 Issue of Directions Now Online Read More »
Cytokinetics and Astellas jointly announced plans to begin a Phase 2 clinical trial in 2015 in patients with spinal muscular atrophy. The trial will test CK-2127107, a muscle activator. CK-2127107 will be the seventh SMA drug program to advance to clinical trials. Cure SMA provided funding to Cytokinetics for research focused on the potential application
Cytokinetics and Astellas Announce New Phase 2 Clinical Trial Read More »
Just over a month ago, we announced a year-end goal of $540,000 to help fund SMA research and family support. Thanks to the generosity of our community, we’re well on our way to that goal. Less than $20,000 separates us from that benchmark. We think we can do even more next year. Developing a treatment
Help Us Make History with $750,000 for SMA Research Read More »
We’ve just launched a survey to help determine the value and success of our family support and patient services programs. This survey is open to individuals affected by SMA, as well as parents and grandparents of those affected by SMA. Over the next several months, we’ll be evaluating which programs should be kept, and which
Cure SMA Launches Survey on Family Support Programs Read More »
We’re excited to announce that we have awarded $50,000 clinical care grant to Dr. Nilesh Mehta, for his project focusing on nutrition in SMA. Some individuals with SMA are at risk for undernutrition, which means they are not receiving enough nourishment. Others are at risk for overnutrition, which means they are consuming too much. Many
