Earlier today, Vertex Pharmaceuticals Incorporated – a corporation designed to fund scientific innovation to create transformative medicines for people with serious and life-threatening diseases – announced the grant recipients for its 2017 Cystic Fibrosis (CF) Circle of Care program.
The CF Circle of Care program was incepted in 2015, and has since awarded 50 grants totaling $3 million to organizations worldwide, all for the benefit of patients of the rare, life-threatening genetic disease. For 2017, the global biotechnology company awarded a total of $1 milion to 15 non-profit medical, academic, patient and community organizations.
This year’s awardees, selected by a committee consisting of both Vertex employees and CF community members, include 4 centers from the United States, 4 from Australia, 2 from Canada, 2 from Spain, 1 from Italy, 1 from the Czech Republic, and 1 from the United Kingdom. The entire list of grant recipients can be seen at the bottom of this article.
“Receiving a CF Circle of Care grant is not only a valuable source of funding, but it also helps connect non-profits like ours with other groups who are striving to make a similar impact in the CF community,” said Brian Callanan, Founder and Executive Director of the Cystic Fibrosis Lifestyle Foundation. “This grant enables us to create a new collaborative program to help people with CF live healthier lives in partnership with three other organizations looking to model our program in their local regions. We are so grateful to be able to help them launch such important work with these funds.”
Research initiatives funded by Vertex’s CF Circle of Care program include programs or tools designed to support people with CF living a fuller, more engaged lifestyle, address challenges, and focus on the education of people with CF, among other goals.
In 2016, Circle of Care grant recipients gathered in Orlando, Florida to discuss their projects that included: websites dedicated to helping CF patients prepare nutritious meals, mobile games to help children with CF take control of their care, cognitive behavioral therapy programs to help adults with CF improve coping skills and more.
The 2017 Circle of Care grant recipients will convene in November in Indianapolis, Indiana during the 31st North American Cystic Fibrosis Conference (NACFC) to discuss their projects, and share advice and inspiration.
2017 CF Circle of Care Grant Recipients:
Organization Description Location
Telethon Kids Institute Enhancing the Social and Emotional Development and Connectedness to Peers and School among Young People Living with CF : An Innovative Online Program to Support Schooling for Young People with Cystic Fibrosis Perth, Australia
Prince Charles Hospital, Adult Cystic Fibrosis Centre Lifting Adherence and Treatment Engagement in CF: Determining the Uptake and Evaluating Inc. the Impact of a CF Specific Educational Website and Parallel Mobile Application (MODULATE-CF) Brisbane, Australia
Alfred Health Patient Reported Experience Measures and Patient Reported Outcome Measures to Evaluate Online Support: Providing Technical Support for an Alfred Health CF Patient Advisory Group Melbourne, Australia
Cystic Fibrosis Queensland CF 4 Kids: An App to Develop Resilience and Coping Skills in Children aged 0-12 with CF Toowong, Australia
Cystic Fibrosis Canada Transition to Lung Transplant: Developing National Standards to Successfully Transition Patients with CF Toronto, Canada
Institut de Recherches Cliniques de Montréal Simplification of CF-related Diabetes Screening by the Use of a Home-based Oral Glucose Tolerance Test (OGTT): A Pilot Study to Evaluate the Validity and Patients Perceptions Montréal, Canada
Czech Cystic Fibrosis Association (CCFA) Creating a Benchmarking Methodology and Software System for Comparison of Care Quality in 5 Czech CF Centres: Preparation Stage Prague, Czech Republic
LIFC Lega Italiana Fibrosi Cistica LIFC Onlus Detecting and Monitoring from Home: Self-monitoring Healthcare Devices Addressed to Pre and Post-transplant CF Patients Rome, Italy
Federación Española de Fibrosis Quística People with CF through Awareness of the Practice of Physical Exercise and Habitual Practice of Healthy Living Habits: A Campaign in Favor of Healthy Habits and Physical Exercise Valencia, Spain
Galician Association of cystic fibrosis Creating Awareness and Education of the Importance of Treatment: A Respiratory Therapy Program at Home in Rural Galicia A Coruña, Spain
Cystic Fibrosis Trust Delivering High Quality End of Life Care to People with CF: Equipping Multidisciplinary CF Teams with the Skills and Confidence to Provide Compassionate, Appropriate and Individualized Support for People with CF who are Nearing the End of their Lives London, United Kingdom
Children’s Hospital Medical Center Transition through the CF Life Span: Development of Anticipatory Guidance and Educational Tools to Promote Self-Management Ohio, United States
Cystic Fibrosis Lifestyle Foundation CF Recreation Grant Collaboration: Building a Shared Resource Focused on Exercise and Healthy Lifestyles in the CF Community Vermont, United States
The Rector and Visitors of the University of Virginia Empowering CF Patients: Development of an Extensive Individualized Educational Program in the Hospital during Admission for CF Exacerbations and at Home using Telemedicine Virginia, United States
Tulane University School of Medicine Tulane Adult Cystic Fibrosis Physical Assessment, Goal-Setting, and Bead Program: Utilizing Tools to Make Objective Measurements in Strength and Body Composition to Facilitate Referral to Physical Therapy, Goal-setting, and Recognition of Accomplishments with a Commemorative Bead Program Louisiana, United States
About Cystic Fibrosis (CF):
Cystic fibrosis is a genetic life threatening disorder that damages the lungs and digestive system. Symptoms include frequent lung infections, coughing and difficulty breathing.
Treatment of CF consists of managing the symptoms associated with the disease although Vertex’s Kalydeco (ivacaftor) and Orkambi (lumacaftor/ivacaftor) have been approved for select groups with specific CFTR mutations.