Mack and Sally Brown Score a Winning Touchdown for DMD with “Dealing for Duchenne” in Austin

Saturday night was a magical evening in Austin.  Coach Mack Brown of the Texas Longhorns and his incredible wife, Sally, hosted “Dealing for Duchenne,” a charity poker tournament that raised funds for CureDuchenne and DMD research. 

Mack & Sally Brown, Laura & Tim Revell

Throughout the week, Tim Revell, who has a son with DMD, and the event chair persons, Kristin Spencer, Julie Applewhite and Monica Korman appeared on all the major TV and sport radio shows to promote the event, but more importantly, inform the public about Duchenne muscular dystrophy, the leading genetic killer of children.

I’ve always heard how wonderful Mack and Sally are. For me, they are the definition of graciousness and generosity. I’m truly touched by their compassion for all of our boys with Duchenne.

Over 350 people joined us and enjoyed the music of “Asleep at the Wheel,” and had the opportunity to mingle with current and past Longhorn football players.  Two Heisman trophy winners, Ricky Williams and Earl Campbell were among the long list of athletes and celebrities that made this a winning night.

Laura & Tim Revell with Ricky Williams

One of my favorite guests was “Bevo” the beautiful bull that is the Longhorn’s mascot.  Several parents of boys with Duchenne from Austin, Houston, and other parts of Texas attended to show their support.

CureDuchenne announced a new research initiative which will fund Dr. Jeff Chamberlain at the University of Washington.  Dr. Chamberlain has been working on gene therapy for DMD for the past 20 years and we are very happy to see him move into clinical trials.  When I saw the crowd on Saturday, I had the distinct feeling that we may turn the corner in awareness for Duchenne and treatments for our boys.  This all started with a small event in Austin, but with Tim and Laura Revell’s persistence and faith, this has become a yearly celebrity event.

Dr. Jeff Chamberlain in his Cowboy Chic

CureDuchenne has established a formula to take the ideas of people who are interested in Duchenne and turn them into successful events…whether it’s a gala dinner, a poker tournament, a mountain climb, or whatever someone’s interest is, we can help you harness that interest along with your passion for saving our sons and turn it into an event that will send research dollars into the projects that are most likely to save our sons.  CureDuchenne already has three funding projects in phase ll and phase lll trials and we most likely will see two additional projects reach clinical trials in 2010 or early 2011.

Please contact me or Sean Marshall if you have an idea…no idea is too crazy.  We are sponsoring a rodeo, created by a very intentional mom…more on that later.  We have the momentum now, let’s keep it going.

Debra

Cure Duchenne: The DMD Summit Meets its Goals

• Duplications and rare mutations
• Next generation exon skipping
• Cardiac
• Bone
• Anti-fibrotic

Scientific Advisory Council in Q & A session with DMD Parents

We were very fortunate to have researchers that have a wide array of expertise, including drug development, clinical trials and regulatory issues.  We are more convinced than ever, that our model of having independent scientific advisors vetting and evaluating all different aspects of DMD research is the best model to follow.

As soon as we confirm our new research projects, we will make this available to the public.  In the meantime, we will be posting the footage of the Breakfast with the Experts that was open to the public.

CureDuchenne’s mission is our name…to cure Duchenne muscular dystrophy.  Please join me in thanking our advisors that volunteer their time to make sure this happens as quickly as possible.

Check out some photos from the event:

from left to right: Brian Tseng, M.D., Ph.D., Eric Hoffman, Ph.D., Kevin Campbell, Ph.D., Ed Kaye, M.D., Pier Lorenzo Puri, M.D., Ph.D.

from left to right: Abby Bronson, Debra Miller (Cure Duchenne Founder & CEO), Jeff Chamberlain, Ph.D., Douglas Macdonald, Ph.D., Carrie Miceli, Ph.D., Stan Nelson, M.D., Brian Tseng, M.D., Ph.D.

from left to right: Brian Tseng, M.D., Ph.D., Tim Revell (CureDuchenne-Austin), Eric Hoffman, Ph.D., Douglas Macdonald, Ph.D.

Barry Byrne, M.D., Ph.D., Mindy Cameron (CureDuchenne-Orange County)

from left ot right: Abby Bronson, Jennifer Wallace, P.T., Debra Miller (DMD Mom)

from left to right: Jeff Chamberlain, Ph.D., Brian Tseng, M.D., Ph.D., Amy Martin (CureDuchenne-Los Angeles), Eric Hoffman, Ph.D., Douglas Macdonald, Ph.D., Ed Kaye, M.D.

from left to right: Stan Nelson, M.D., Carrie Miceli, Ph.D., Jeff Chamberlain, Ph.D., Ed Kaye, M.D., Douglas Macdonald, Ph.D., Eric Hoffman, Ph.D.

from left to right: Eric Hoffman, Ph.D., Kevin Campbell, Ph.D., Brian Tseng, M.D., Ph.D., Barry Byrne, M.D., Ph.D., Jas Seehra, Ph.D.

Jennifer Wallace, P.T.

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Mothers Luncheon Discusses Duchenne Muscular Dystrophy

Yesterday, a group of 15 women from the LA/Orange County area got together for what appeared to be a festive luncheon. But there was something different about this group. They all have one common bond: their sons all have Duchenne muscular dystrophy (DMD).

In Debra Miller’s words:

“Put 15 DMD moms together and watch out! We are mama bears and there is this threat between us and our bear cubs called Duchenne.”

The concerned mothers talked about a variety of topics including how to raise more awareness and of course get more money into the hands of researchers to find a cure. The 2010 Climb to Cure Duchenne was of particular interest as a way that everyone can get involved to create awareness and raise money in an exciting way.

If you’re in the Southern California area and would like to learn more about the next mother’s luncheon, please email Debra Miller (debra [at] cureduchenne.org)

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