Vertex Pharmaceuticals, Inc. recently announced that 18 nonprofit groups were chosen to receive Cystic Fibrosis (CF) Circle of Care grants for 2016, totaling nearly $1 million. The award, now in its second year, is given to medical, academic, patient, and community organizations aiding the cystic fibrosis (CF) community.
Despite recent improvements in treatment, and in physical and emotional support for CF patients and caregivers, significant needs remain. Vertex’s Circle of Care initiative aims to promote collaboration and provide funding to groups working to enhance care and resources for people with CF.
This year’s winners were chosen from among 58 proposals made by groups based in 15 countries, and amounted to a 15 percent increase over last year’s applications. The 18 projects selected (see full projects here) by a multidisciplinary evaluation committee of internal and independent experts – including a CF nurse, a pulmonologist and the parent of a CF patient – came from Australia, Austria, Belgium, Canada, the Czech Republic, France, Germany, the Netherlands and the United States.
To be eligible, the applicants had to meet at least one of the following goals:
- Promote fuller lives and healthier lifestyles in people with CF
- Address the psychological and social challenges faced by patients
- Aim to improve family and caregiver support
- Provide tools to help CF patients take ownership of their healthcare needs
- Help CF patients learn how best to achieve goals ranging from lifestyle transition to navigating new environments
“We are making tremendous advancements in treating the underlying cause of cystic fibrosis for many people living with the disease, but our commitment to CF goes beyond new medicines,” Vertex’s chairman, president and CEO, Jeffrey Leiden, MD, PhD, said in a press release. “We’re proud to support these 18 organizations in their efforts to enhance care and resources for the day-to-day management of CF and the physical and emotional challenges patients and their families’ experience.”
All grant recipients will present their proposals at a Circle of Care Forum in October 2016 that coincides with the beginning of the North American Cystic Fibrosis Conference (NACFC). Last year’s awardees presented innovative and patient-centered initiatives, like the development of a smartphone app for teenagers to improve disease self-management, the implementation of a program to screen for anxiety and depression in children and adult CF centers, and a virtual education program for CF patients and caregivers. Recipients also took advantage of the forum’s opportunity to meet and exchange contact information and submit collaborative proposals for consideration in this year’s round, and organizers hope this year’s event will be as fruitful.
“Initiatives like Vertex’s Cystic Fibrosis Circle of Care grants are important for the CF community because they enable the development and delivery of innovative programs and services that have a direct impact on this medically fragile community,” Sue Landgraf, executive director of Cystic Fibrosis Research, Inc. (CFRI), said. “These grants make it possible for patient advocacy agencies, like CFRI, to think outside the box of standard programs and create initiatives that not only benefit those diagnosed with CF, but also educate the general public and raise awareness about the rare, life-shortening genetic disease.”
CF is a rare, life-threatening genetic disease that affects nearly 75,000 people in Australia, Europe, and North America. The condition derives from a defective, or missing, CF transmembrane conductance regulator (CFTR) protein, resulting from mutations in the CFTR gene. The defective function or lack of CFTR proteins leads to a poor flow of salt and water into and out of the cells in several organs. When it affects the lungs, abnormally thick, sticky mucus builds and may lead to chronic lung infections.
Vertex, founded in 1989 in Cambridge, Massachusetts, is a a biotech company focused on the discovery and development of new medicines for serious and life-threatening diseases, including CF.