The nonprofit organization Cure SMA has released another one of its booklets focused on improving care for patients with spinal muscular atrophy (SMA). This edition, which is entitled “The Musculoskeletal System“ and included in the organization’s care series booklets, aims to increase…
The non-profit organization Cure SMA has released the Spring 2015 issue of Compass, its research publication on the organization’s mission and most recent updates. Compass is a newsletter and online publication available for download that intends to increase the knowledge of patients who suffer from…
Jim, Mckenna and Amy Ellixson The Annual Muscles for Mckenna Gala was held for the third year in Philadelphia, Pennsylvania and has raised $107,000 in donations to support the non-profit organization Cure SMA. It is still possible to donate to help the organization reach the $115,000 goal, as the funding will finance…
The global consultancy company Communispace is conducting a market research project with care providers and family members of patients who suffer from spinal muscular atrophy (SMA). Those interested in participating need to simply fill out an online survey on the demands of taking care of a loved one…
The nonprofit organization Cure SMA has announced the launch of a new chapter based in Virginia. The new Cure SMA Virginia Chapter will not only serve residents of the state, but also those with the disease and their families in Washington DC. The establishment of…
The non-profit organization Cure SMA is praising families that donate human tissue from their deceased relatives who suffered from spinal muscular atrophy (SMA), as the donations are crucial for a research program assessing the damage caused by SMA to the nervous systems of patients. The research is dedicated to increasing…
The non-profit organization Cure SMA has provided a $140,000 research grant to support the development of a project conducted by Chad Heatwole, MD, at the University of Rochester. The project entitled “Development of a Clinically Relevant Outcome Measure for SMA Therapeutic Trials” is supported by the organization’s basic research funding,…
The European Medicines Agency (EMA) has recognized a new European subsidiary of the biotech company AveXis, Inc. by granting it Small and Medium Sized Business Entities (SME) designation. AveXis EU Ltd. will work together with the parent company to improve the quality of life of patients who suffer…
The non-profit organization Cure SMA is inviting its members and other interested parties to join the Annual SMA Conference, which is taking place between June 18 and 21 in Kansas City, Missouri. The event has been held by the organization since 1989 and it currently features the largest SMA-related research meeting…
Biogen Indec and Isis Pharmaceuticals Inc. recently announced they will start recruiting patients for NURTURE, a multi-center, Phase 2 clinical trial that will evaluate the efficacy of ISIS-SMNRx (ISIS 396443) in pre-symptomatic newborns that have a genetic diagnosis of Spinal Muscular Atrophy (SMA). The primary objective of the…
