Vertex Awards $1 Million in Grants to 18 Non-profit Organizations to Advance Initiatives for People Living with Cystic Fibrosis
February 24 2016 - 9:05AM
Business Wire
Vertex Pharmaceuticals Incorporated (Nasdaq: VRTX) today
announced it has awarded the company’s 2016 Cystic Fibrosis (CF)
Circle of Care grants, totaling approximately $1
million, to 18 non-profit medical, academic, patient and
community organizations. In its second year, the grants fund
innovative programs to help the cystic fibrosis community. CF is a
rare, life-threatening genetic disease affecting approximately
75,000 people in North
America, Europe and Australia.
Despite improvements in the treatment of CF, physical and
emotional support for patients and caregivers is a continuing need.
Vertex’s Cystic Fibrosis Circle of Care initiative
promotes collaboration and provides funding to non-profits that can
enhance care and resources for people with CF.
During this year’s process, 58 proposals were received from
organizations in 15 countries - a 15 percent increase in total
applicants since last year. Ultimately 18 projects from Australia,
Austria, Belgium, Canada, Czech Republic, France, Germany, the
Netherlands and the United States were selected by a
multidisciplinary group of internal and independent experts,
including a CF nurse, pulmonologist and parent of a CF patient.
View the full list of recipients here.
The organizations and projects selected met at least one of the
following goals:
- Help people with CF live a fuller, more
engaged lifestyle;
- Address the psychological and social
challenges CF patients face;
- Improve overall support to family and
caregivers;
- Provide tools that help CF patients
take more ownership of their healthcare needs; and
- Educate CF patients on topics including
lifestyle transitions, adherence and 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,”
said Jeffrey Leiden, M.D., Ph.D., Chairman, President and
Chief Executive Officer of Vertex. “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.”
Grant recipients will present their work at a Circle of Care
forum in October 2016, prior to the commencement of the North
American Cystic Fibrosis Conference (NACFC). Projects presented at
last year’s meeting covered a wide variety of innovative and
patient-centric initiatives including the development of a
smartphone-based tool for adolescents to improve self-management of
CF, implementation of a program to screen for anxiety and
depression in pediatric and adult CF centers and a virtual
education program for people living with CF and their caregivers.
The forum provided an opportunity for the awardees to meet and
exchange contact information and submit a collaborative proposal
for consideration to the second annual Cystic Fibrosis Circle of
Care program.
One of last year’s grant recipients, Cystic Fibrosis Research,
Inc. (CFRI), a non-profit that spreads awareness of cystic fibrosis
and provides educational and personal support, is participating for
the second year in both a collaborative initiative and standalone
project. They will focus on increasing adherence, advocacy and
awareness among the CF community.
“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,” said Sue
Landgraf, Executive Director of Cystic Fibrosis Research, Inc.
“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.”
To learn more about Vertex’s grants programs, which include
substantial support for medical education, patient education and
general charitable donations, please visit grants.vrtx.com.
Information about our 2017 Cystic Fibrosis Circle of Care program
will be available in September.
About Cystic FibrosisCystic fibrosis is a rare,
life-threatening genetic disease affecting approximately 75,000
people in North America, Europe and Australia.
CF is caused by a defective or missing cystic fibrosis
transmembrane conductance regulator (CFTR) protein resulting from
mutations in the CFTR gene. Children must inherit two
defective CFTR genes — one from each parent — to have CF.
There are approximately 2,000 known mutations in
the CFTR gene. Some of these mutations, which can be
determined by a genetic, or genotyping test, lead to CF by creating
non-working or too few CFTR protein at the cell surface. The
defective function or absence of CFTR proteins in people with CF
results in poor flow of salt and water into and out of the cell in
a number of organs. In the lungs, this leads to the buildup of
abnormally thick, sticky mucus that can cause chronic lung
infections and progressive lung damage in many patients that
eventually leads to death. The median age of death is in the
mid-to-late 20s.
About VertexVertex is a global biotechnology company that
aims to discover, develop and commercialize innovative medicines so
people with serious diseases can lead better lives. In addition to
our clinical development programs focused on cystic fibrosis,
Vertex has more than a dozen ongoing research programs aimed at
other serious and life-threatening diseases.
Founded in 1989 in Cambridge, Mass., Vertex today has
research and development sites and commercial offices in the
United States, Europe, Canada and Australia. For six
years in a row, Science magazine has named Vertex one of
its Top Employers in the life sciences. For additional information
and the latest updates from the company, please
visit www.vrtx.com.
(VRTX-GEN)
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Vertex Pharmaceuticals IncorporatedJenna McPhee,
617-341-6536ormediainfo@vrtx.comorUS,
617-341-6992orEurope & Australia, +44 20 3204
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