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
The organizations and projects selected met at least one of the
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
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 Fibrosis
Cystic 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.
Vertex 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
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.
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Vertex Pharmaceuticals Incorporated
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Source: Vertex Pharmaceuticals Incorporated
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