Duchenne muscular dystrophy is arguably the most devastating disease caused by a single gene. We felt that Duchenne deserves an entire month of awareness. You can help by switching to the hourglass logo.

1. FOR IMMEDIATE RELEASE
For more information, contact:
Steve Dreher, (603) 464­9729
Duchenne Alliance Declares June as Duchenne
Awareness Month, Adopts Hourglass Logo
KINGSTON, MA, June 8, 2013 ­­ The Duchenne Alliance, an international consortium of
organizations committed to aggressively funding research to treat or cure Duchenne
muscular dystrophy, has declared the month of June “Duchenne Awareness Month.”
For the month of June, the Duchenne Alliance is calling on the global community to show its
support for finding a treatment or cure for Duchenne.
“Imagine scars throughout every muscle in your body. It would be hard to move. Hard to
breath. Hard to pump blood. As the number one genetic killer of children in the world, this
progressive disease is arguably the most devastating disease known,” said Carlo Rago,
PhD, Scientific Advisor to the Duchenne Alliance. “It destroys children and often families.
The average life expectancy of a child diagnosed with Duchenne is 20 years. Much of that
brief life is spent losing mobility, confined to a wheelchair, with a respirator, until, ultimately,
the disease attacks the heart and lungs. Yet, shockingly, no one has declared an
awareness month for Duchenne. “
Much of the global Duchenne community has adopted an hourglass logo with the tagline,
“Give Them More Time.”
“That’s really what we’re trying to do,” explained Steve Dreher, founder of Hope For Gus, a
Duchenne research organization named for his son Gus, who was diagnosed with
Duchenne three years ago. “Science is on the edge of changing the course of Duchenne
muscular dystrophy. We believe that, as a cohesive group of parents, advocates and
scientists, we will support research that will discover effective treatments for this
generation of children affected by Duchenne. Conquering Duchenne will be one of the
greatest medical stories of our time.”
The Alliance is asking anyone with a connection to muscular dystrophy as well as the

2. general public to “like” the Duchenne Alliance page on Facebook, and change profile
pictures to the hourglass logo. Additionally, they’re asking for supporters to Tweet about
the Duchenne Alliance: @DuchenneAll or #DuchenneAlliance
Tony Levene, CEO of the UK­based, Duchenne Now, explained his hopes for the June
awareness campaign. “June is when school lets out, the weather is nice, kids are
supposed to be running and playing...but boys with Duchenne cannot run, cannot play. It’s
time for us to put an end to Duchenne. It’s time for us to take back our boys from this
horrific disease. Awareness is the first step to funding promising research. When people
hear the Duchenne story, they respond; they want to help. Our goal is for this campaign to
mobilize people to ask how they can help and, ultimately, contribute to the cause so we can
move research faster.”
Duchenne Alliance
The Duchenne Alliance is a group of independent, non­profit organizations around the
world that are united to defeat Duchenne muscular dystrophy. The foundations share their
resources to maximize the effectiveness of their funds. The Alliance relies on a global
network of foundations and scientific advisors to co­identify, co­review, and co­fund only
the most promising biomedical research. They achieve maximum awareness,
transparency, and efficiency using a central Dashboard to manage their research efforts.
Current members include: Action Duchenne, Alex's Wish, Coalition Duchenne, Cure
Dale's Duchenne, Darius Goes West, DMD HERO, Duchenne Foundation, Duchenne
Hungary, Duchenne Now, Duchenne Research Fund, Foundation to Eradicate Duchenne,
Harrison's Fund, Hope for Gabe, Hope for Gus, JB's Keys, Jett Foundation, John Owen's
Adventure, INC, Joining Jack, Liam's Leep, MDA India, Michael’s Cause, Misko
Foundation, Pietro’s Fight, Race MD, Romito Foundation, Ryan's Quest, Save our Boys
Foundation, Team Joseph, The Duchenne Children's Trust, The Duchenne Research Fund,
Two Smiles one HOPE, Zack Heger Foundation, Little Hercules Foundation
Duchenne Alliance Research Fund
The Duchenne Alliance created a research fund to collect and apply monetary donations to
the most promising research. If you have a personal relationship with any of the
participating foundations above, please continue to donate there. Alternatively, please
donate to the Duchenne Alliance Research Fund at the address below.
Duchenne Alliance Research Fund
68 Evergreen Street, Suite Two
Kingston, Massachusetts 02364

3. The Duchenne Alliance Research Fund is registered as a non­profit in Delaware and is
applying for tax­exempt, non­profit status; please consult your tax advisor for applicable tax
benefits.
Please discover more about Duchenne on the following sites:
Facebook, Duchenne Alliance
Twitter, @DuchenneAll or #DuchenneAll
www.duchennealliance.org