SAN FRANCISCO, Feb. 28, 2019 /PRNewswire/ -- Audentes
Therapeutics, Inc. (Nasdaq: BOLD), a biotechnology company
focused on developing and commercializing innovative gene therapy
products for patients living with serious, life-threatening rare
diseases, today announced its support for Rare Disease
Day® with the launch of "Be Bold for Courageous
Patients," a program designed to meaningfully impact the lives of
patients living with rare diseases.
"Be Bold for Courageous Patients" is intended to enhance and
expand the Company's commitment to rare disease patients and their
families. As part of this year's effort, Audentes will
provide a sponsorship grant to help support children from the rare
disease community to attend The Painted Turtle and Double H Ranch,
medical specialty camps that offer the opportunity for kids to
enjoy being kids in a camp environment specifically built for their
needs. Children and their families will attend The Painted
Turtle during Neuromuscular and Genetic Family Weekend from
March 1 – 3, in Lake Hughes, California, or Double H Ranch
during Camp Inspiration for children who are BIPAP or ventilator
dependent from June 7 – 11, in
Lake Luzerne, New York.
These unique camps offer children and their families the
opportunity to sing, laugh, grow, and discover their potential.
Audentes employees are also volunteering their time to make
camper family weekend kits, blankets, and turtle pillows for
families attending the Neuromuscular and Genetic Family Weekend and
Camp Inspiration. Both The Painted Turtle and Double H Ranch
are part of SeriousFun Children's Network founded by Hollywood actor and philanthropist
Paul Newman. All SeriousFun
camps and programs are provided at no cost to families and rely on
grants and donations to help them achieve their mission.
Families can apply for an opportunity to attend directly through
each camp's website and by following their standard application
process.
"Audentes is derived from the Latin word 'audeo,' which means
'those who have courage; those who have boldness, daring.'
The name Audentes reflects our heritage as a patient-focused
company dedicated to making a bold effort to find solutions for
patients," said Matthew R.
Patterson, Chairman and Chief Executive Officer. "To
that end, we are pleased to launch 'Be Bold for Courageous
Patients' to further serve the needs of the rare disease community
in unique and positive ways, including teaming up with The Painted
Turtle and Double H Ranch. Championing and serving patient
communities creates a sense of mission and purpose that inspires
all Audentes employees, and our broader commitment to the rare
disease community is core to our company beliefs."
"We are excited to have Audentes as a sponsoring partner this
year," said Chris Butler, CEO of The
Painted Turtle. "This meaningful support enables children
living with rare diseases to have a positive camp experience and
help their families bond through our Family Weekend programs."
The Audentes "Be Bold for Courageous Patients" program is
comprised of the following initiatives:
- Support rare disease work. Provide corporate grants and
contributions that aid the work of scientists, researchers, medical
professionals, and advocacy groups that are finding ways to help
the rare disease community and making a lasting, positive impact.
In 2019, Audentes will contribute to more than 30
organizations.
- Impact the patient community in a unique, positive way.
Beyond research and development of innovative gene therapy
products, Audentes wants to positively impact the lives of patients
and families in a unique way, such as supporting The Painted Turtle
and Double H Ranch medical specialty camps.
- Evolve employee volunteerism companywide to further
Audentes' commitment to the patient community. All employees
receive time off to volunteer for the organizations that most
inspire them, focusing on the patient community.
There are approximately 7,000 different types of rare diseases
affecting up to 350 million people worldwide. Eighty percent
of rare diseases are genetic in origin, and thus are present
throughout a person's life, even if symptoms do not immediately
appear. An estimated 50 percent of the people affected by a
rare disease are children, and 30 percent of children with rare
disease will not live to see their fifth
birthday.1 Although rare disease patients and
their families face many challenges, enormous progress is being
made every day.
About Rare Disease Day
Rare Disease Day takes place on the last day of February, a month
known for having a 'rare' number of days. It was first
launched in Europe by EURORDIS and
its Council of National Alliances in 2008 and is now observed in
more than 94 countries. Rare Disease Day is sponsored in
the United States by the National
Organization for Rare Disorders (NORD)®, a leading
independent, non-profit organization committed to the
identification, treatment, and cure of rare diseases.
About The Painted Turtle
The Painted Turtle's mission is to provide a year-round,
life-changing and authentic camp experience for children with
chronic and life-threatening illnesses. The Painted Turtle supports
children's medical needs, inspires them to reach beyond their
illness, and provides care, education, and respite for their
families. All campers and families attend free of charge. For
more information, visit www.thepaintedturtle.org.
About the Double H Ranch
The Double H Ranch, co-founded by Charles
R. Wood and Paul Newman,
provides specialized programs and year-round support for children
and their families dealing with life-threatening illnesses.
Our purpose is to enrich their lives and provide camp experiences
that are memorable, exciting, fun, empowering, physically safe and
medically sound. All programs are FREE of charge and capture
the magic of the Adirondacks. For more information, visit
www.doublehranch.org.
About Audentes Therapeutics, Inc.
Audentes Therapeutics (Nasdaq: BOLD) is a biotechnology company
focused on developing and commercializing innovative gene therapy
products for patients living with serious, life-threatening rare
diseases. We are currently conducting Phase 1/2 clinical
studies of our lead product candidates, AT132 for the treatment of
X-linked Myotubular Myopathy (XLMTM), and AT342 for the treatment
of Crigler-Najjar syndrome. We have two additional product
candidates in development, including AT845 for the treatment of
Pompe disease, and AT307 for the treatment of the CASQ2 subtype of
catecholaminergic polymorphic ventricular tachycardia
(CASQ2-CPVT). We are a focused, experienced and passionate
team committed to forging strong, global relationships with the
patient, research and medical communities.
For more information regarding Audentes, please visit
www.audentestx.com.
Audentes Contacts:
Investor Contact:
Andrew Chang
415.818.1033
achang@audentestx.com
Media Contact:
Katie Hogan
415.951.3398
khogan@audentestx.com
1
https://globalgenes.org/rare-diseases-facts-statistics/
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