Held Friday, March 13, in Philadelphia, the 3rd Annual Muscles for Mckenna Gala has raised an incredible $107,000, and organizers are continuing to take donations in hopes of reaching their goal of $115,000. In its three-year history, this event has raised a total of $321,000. The event is led by chairperson Kellie Keenan, along with […]
Muscles for Mckenna Gala Raises Over $100,000 Read More »
Cure SMA is reaching out on behalf of Communispace to invite people caring for a family member with Spinal Muscular Atrophy to participate in a market research project. The pharmaceutical company sponsoring the project has partnered with Communispace, a market research company, to conduct the research. Through taking this short survey, you’ll help influence future
Share Your SMA Story for a New Research Project Read More »
Cure SMA is pleased to announce the creation of a new chapter in Virginia. This chapter will also serve residents of Washington DC. Led by chairpersons Jessica White (family support), Jim Ferry (fundraising), and Kyle & Laura Derkowski (communications/awareness), the chapter is excited to begin helping families throughout their area, and fundraising to support research
Cure SMA Welcomes the Virginia Chapter Read More »
Families’ generous donations of human tissues at the time of death are critical to an ongoing program directed to understanding how SMA damages the nervous system. One persistent mystery about SMA, of potential great importance, is why the low level of the SMN protein within all cells particularly affects motor neurons. With the tissues available
Human Tissue Donation Program Advances Understanding of SMA Read More »
Cure SMA has released the schedule for the 2015 Annual SMA Conference, which will be held in Kansas City, June 18-21. This will be the 26th year that Cure SMA has hosted this conference. The schedule includes the timeline of workshops and events, including the Meet & Greet and Family Fun Fest, the Family Friendly
Cure SMA Releases the Schedule for the 2015 Annual SMA Conference Read More »
Cure SMA has awarded a $140,000 research grant to Chad Heatwole, MD, at the University of Rochester for his project, “Development of a Clinically Relevant Outcome Measure for SMA Therapeutic Trials.” As more spinal muscular atrophy drug programs progress to clinical trials, it becomes critically important to develop ways of accurately measuring whether or not
The Annual SMA Conference consists of two separate events that run in parallel. The first is focused on families affected by SMA, who gather for workshops, keynote sessions, networking, and fun events such as a dance party, movie night, and more. The second event is the SMA Researcher Meeting, the largest research meeting in the
SMA Researcher Meeting to Host Over 100 Presentations Read More »
Biogen, in collaboration with Isis Pharmaceuticals, has announced that they will soon open recruiting for NURTURE. This is a multi-center, Phase 2 clinical study evaluating the efficacy of the investigational drug, ISIS-SMNRx (ISIS 396443), in pre-symptomatic newborns that have a genetic diagnosis of Spinal Muscular Atrophy (SMA). The purpose of the NURTURE study is to
Biogen Announces NURTURE, a New Phase 2 Clinical Trial Read More »
On Monday, February 9, 2015, Newfield Exploration presented Cure SMA with a grant for $2,500 to support ongoing research in finding a cure. Accepting the grant on behalf of Cure SMA were Marynell Larson, president of the Cure SMA Rocky Mountain Chapter, and Michelle Pritekel, board member of the Rocky Mountain Chapter. In 2001, Newfield
Newfield Exploration Gives Generous Grant to Cure SMA Read More »
Cure SMA is pleased to announce that we have extended our spinal muscular atrophy research program with the California Institute of Biomedical Research (CALIBR) with an additional $315,000 drug discovery grant. This partnership first began in 2012, when we awarded $700,000 to Dr. Peter G. Schultz and his team for their drug discovery program, “Optimization
