PTC Therapeutics, Inc. recently announced the recipients of its global STRIVE Awards (Strategies to Realize Innovation, Vision and Empowerment) program, which supports nonprofit associations assisting the cystic fibrosis (CF) community. The STRIVE Program recognizes the vital role patient advocacy groups play in giving voice to individuals affected by these rare diseases. Specifically, PTC seeks to facilitate unique, inventive ideas, methods or programs that support patients and families within rare disease communities.
The announcement coincides with National Cystic Fibrosis Awareness Month, which is celebrated in May.
“We are pleased to announce the winners of the 2016 STRIVE Awards for cystic fibrosis,” said Stuart W. Peltz, PhD, Chief Executive Officer, PTC Therapeutics, in a press release. “This global program recognizes the efforts of patient advocacy groups and aims to support them in the work they do to serve the needs of individuals and families affected by this rare disease. Through STRIVE, we want to encourage groups across the world to submit novel and creative proposals that will address the unmet needs of the community.”
The 2016 STRIVE Awards recipients are four exceptional organizations committed to supporting people affected by CF. In recognition of their novel and innovative solutions to the unmet needs of the CF community, each group was awarded $30,000 (organizations in Ireland and Italy tied, so they split the award funding) to enable them to deliver projects to benefit those affected by the disease.
This year’s STRIVE Awards for CF went to:
– The Cystic Fibrosis Trust’s Youth Empowerment Officer, in the United Kingdom. The award will create services and resources to support and encourage young people to live their lives fully and naturally, without compromising their health.
– The Swedish Cystic Fibrosis Association. The award will help to create the Swedish CF Olympics, where patients and their families get together for a day of fun that strengthens the CF community.
– Lega Italiana Fibrosi Cistica Onlus in Italy. The award will be used to introduce a tele-monitoring program for pre- and post-lung transplant patients in Lombardia.
– Cystic Fibrosis Ireland. The award will be used to deliver an exercise regimen to inspire and empower patients with CF to get active and improve their health.
CF is a genetic disorder that affects mostly the lungs but also the pancreas, liver, kidneys, and intestine. Long-term issues include difficulty breathing and coughing up mucus as a result of frequent lung infections. CF is inherited in an autosomal recessive manner. It is caused by the presence of mutations in both copies of the gene for the cystic fibrosis transmembrane conductance regulator (CFTR).
Funds are awarded to qualifying organizations via a competitive process in which all entries are reviewed by an independent, external committee. The judges have proven experience in rare diseases, patient advocacy, and funding initiatives.
“We have a tremendous amount of respect for the important services and programs provided by these organizations for the cystic fibrosis community,” said Mary Frances Harmon, Global Head of Patient Advocacy, PTC Therapeutics. “PTC shares the same commitment as each of these organizations with patients at the center of everything we do. We are delighted to have received such a positive response from the community, and look forward to seeing these initiatives make a real impact on the lives of people living with cystic fibrosis.”