Third Annual BLINGO Raises $200,000 for CureDuchenne
CureDuchenne Honors Sarepta Therapeutics for Their Commitment to
Duchenne Community
PHILADELPHIA–(BUSINESS WIRE)–$SRPT #BlingoPhilly–On Saturday, April 30th, CureDuchenne,
a national nonprofit that raises awareness and funds for research to
find a cure for Duchenne Muscular Dystrophy, hosted a “blinged-out”
event at The Logan Hotel—featuring special bingo callers including FOX29
News General Assignment Reporter, Jennaphr
Frederick, former Governor Edward
G. Rendell, WMMR Preston and Steve show producer, Marisa
Magnatta, local sensation John
Bolaris, and comedian Joe
Conklin in celebration for a cause to help save the lives of those
with Duchenne.
The event brought together hundreds of Philadelphia VIP’s, celebrities
and influencers, raising more than $200,000. The event included a
four-round game of bingo, an auction with prizes ranging from a
four-night stay anywhere in the world to a luxury African safari and a
pledge where guests at the event donated as much as they wanted to help
find a cure for this fatal disease. Guests enjoyed music from DJ Nigel
Richards along with some crafted cocktails and delicious small
plates.
This year, BLINGO to CureDuchenne honored Sarepta Therapeutics, a
biopharmaceutical company focused on developing innovative RNA-targeted
therapeutics, as a supporter in fighting Duchenne muscular dystrophy.
CureDuchenne pushes toward innovation and advancement of Duchenne
research. CureDuchenne provided early funding to Sarepta which helped
the company move into human clinical trials. The U.S. Food and Drug
Administration (FDA) is reviewing Sarepta’s New Drug Application (NDA)
for eteplirsen, an experimental drug currently in clinical trials. The
FDA PDUFA date scheduled for completion of the review is May 26, 2016.
Paul Miller, co-founder of CureDuchenne presented Ed Kaye, interim CEO
of Sarepta Therapeutics with an award for their commitment to the
Duchenne community.
“We are delighted to honor Dr. Ed Kaye and the entire Sarepta
Therapeutics organization for their tireless efforts in what potentially
could be the first Duchenne drug approved in the U.S.,” said Paul
Miller, co-founder of CureDuchenne. “Their Duchenne drug has been
beneficial for those who have been on the clinical trials. In addition
to their expertise in rare disease Ed brings commitment and compassion
for the patients.”
“Monday, April 25th was a historic day for Duchenne Muscular
Dystrophy, there were hundreds of families who came to Washington D.C.
to support the boys who were receiving eteplirsen,” stated Ed Kaye,
interim CEO of Sarepta Therapeutics. “We were so proud of the boys that
came together, and what you need to remember is that everyone is behind
this community. This is not a single step, this is a long journey.”
BLINGO is spearheaded by the Gambhir family, who reside in Center City
Philadelphia and know first-hand the impact that Duchenne can have on a
young boy and his family. They are devoted to finding a treatment and a
cure for their son Yuva, a spirited 14-year-old who gave a heartfelt and
inspiring speech explaining his lack of ability to stand, walk and keep
up with his friends.
“Since last year, Duchenne has made things even more difficult for me
and my muscles are even weaker,” stated Yuva Gambhir. “I don’t want to
focus on these negative things because in the middle of all of this
craziness I realized something, I see how the doctors and everyone else
really go out of their way to help me and other boys with Duchenne. I
think we can all be the change we wish to see, we just have to look past
the challenges.”
CureDuchenne uses a multi-dimensional approach to identifying and
funding potential treatments for Duchenne. CureDuchenne has been working
to “treat the whole disease,” with multiple therapeutic strategies
working together to address the many effects that Duchenne has on the
body. CureDuchenne has funded research for exon skipping,
anti-inflammatory and anti-fibrotic treatments, gene therapy, as well as
cardiac drugs to treat heart failure, the leading cause of death for
those with Duchenne.
BLINGO to CureDuchenne sponsors included: Allan Domb Real Estate, Baker
Hostetler, CA Spalding & Co, the Condo Shop, Domus Inc., Drexel
University, Sandra Duggan and Javier Kuehnle, EKL Machine, The Tax
Accounting Group of Duane Morris LLP, Gambhir Family, Governor’s Woods
Foundation, Fatema and Iqbal Haider, KGM, Krevitz Metals, Oller Family,
OTG Management, Parx Casino, Philadelphia Eagles, Photobot, Sarepta
Therapeutics, Small Luxury Hotels of the World, Sugar House Casino,
Thomas Jefferson University and Jefferson Health, and Wescott Financial
Advisory Group LLC.
Join the conversation with CureDuchenne on Facebook,
Twitter
and YouTube.
About CureDuchenne:
CureDuchenne is a national nonprofit organization located in Newport
Beach, Calif., dedicated to finding a cure for Duchenne, the most common
and most lethal form of muscular dystrophy. As the leading genetic
killer of young boys, Duchenne affects more than 300,000 boys worldwide.
CureDuchenne has garnered international attention for its efforts to
raise funds and awareness for Duchenne through venture philanthropy.
With the help of CureDuchenne’s distinguished international panel of
Scientific Advisors, funds raised by CureDuchenne support the most
promising research aimed at treating and curing Duchenne. To date, nine
CureDuchenne research projects have advanced into human clinical trials
– a unique accomplishment, as few health-related nonprofits have been as
successful in being a catalyst for human clinical trials. www.cureduchenne.org
About Duchenne:
Duchenne is a devastating muscle disease in children. Historically,
most boys who have it do not survive beyond their mid-twenties, and
those that do will be wheelchair bound by age 12 and experience social
isolation. The simplest of tasks become difficult, and in the later
stages, heart and breathing muscles begin to fail. Nearly 20,000 boys
are living with the disease in the United States alone and more than
300,000 worldwide. The disorder knows no cultural, economic or social
boundaries.
Contacts
Cashman & Associates
Shana Saddic
215.627.1060 tel
610.937.9977
cell
shana@cashmanandassociates.com
