NEWPORT BEACH, Calif.–(BUSINESS WIRE)–#Care—CureDuchenne,
the leading nonprofit focused on finding a cure for Duchenne muscular
dystrophy, launched a new website today at www.CureDuchenne.org
to further reflect its mission which focuses on improving and extending
the lives of all those with Duchenne.
muscular dystrophy is a fatal genetic disorder that causes muscle
degeneration and typically effects boys. Currently there are nearly
15,000 boys in the U.S. battling this disease and 300,000 worldwide.
Most boys with Duchenne lose their ability to walk by age 12 and do not
survive beyond their mid-20s. As the disease progresses, the simplest of
tasks become difficult, and in the later stages, heart and breathing
muscles begin to fail. At this time, there is no cure for Duchenne.
“CureDuchenne continues to accelerate the cure, redefine care and build
a community for all those impacted by Duchenne,” said Debra Miller,
founder and CEO of CureDuchenne. “We are dedicated to finding a cure for
this devastating disease. We hope that with the help of the new website,
individuals will be able to learn more about Duchenne and take action to
help find a cure.”
The new website provides resources and information on three core areas:
With a goal of finding a cure for all genetic mutations of Duchenne,
CureDuchenne is focused on funding the most promising and qualified
preclinical and clinical research to save lives.
There are limited treatment options for Duchenne patients, and
CureDuchenne provides a vital education resource for parents,
caregivers and clinicians in order to help ensure loved ones have the
CureDuchenne brings together families, caregivers and medical
professionals to share experiences, advice, and personal stories,
giving hope and support to the entire community.
The updated website allows viewers to find Duchenne-related resources
ranging from research overviews to family stories about those affected
with Duchenne. The website also includes information on free upcoming
CureDuchenne Cares workshops; clinical trial information; fact sheets
and infographics about Duchenne; details on exon skipping; Duchenne care
topics such as physical therapy; and more.
The website comes at a pivotal time in continuing CureDuchenne’s
progress towards finding a cure. This past year has been a victorious
one in many ways, with the approval of the first ever drug to treat
Duchenne; though Exondys51 is only effective for 13% of the Duchenne
population, it’s a big step in the right direction. Another drug
EMFLAZA, a steroid, was also approved for all boys with Duchenne.
CureDuchenne’s research portfolio is also highlighted on the new website
in the CureDuchenne
Ventures section. It includes 12 wide-ranging projects to help treat
the whole disease. This pipeline of therapies comes from a diverse array
of cutting edge technologies used to treat all aspects of Duchenne.
CureDuchenne Ventures’ early funding helps Duchenne science attract
future investments made by venture capital firms, biotech and
CureDuchenne was founded in 2003 with a focus on saving the lives of
those with Duchenne muscular dystrophy, a disease that affects more than
300,000 boys worldwide. With support from CureDuchenne, nine research
projects have advanced to human clinical trials. CureDuchenne also is
the innovator bringing physical therapy and standard of care to local
communities around the country through CureDuchenne
Cares. For more information, please visit CureDuchenne.org
and follow us on Facebook,
Karen Harley, (949) 872-2552