My Research Project - End Duchenne Grant Program

When Kimberly approached me about sponsoring a Parent Project this year research was the obvious choice for me. I relish reading research papers like my wife Kristin does a Jane Austen novel. I suppose not everyone enjoys a riveting tale of genetics, molecular biology and pharmaceuticals. I cannot explain why I do. This is such an exciting time in DMD research and I want everyone to get excited. This is where the Cure will come from. Some day, somewhere some scientist will look up from their microscope and say “That's it! We did it!”. There will be a cure for all of our boys. But they won't get there without our help.

This summer PPMD introduced the End Duchenne Prize. This is a grant program to provide funding to research initiatives that scored high on the NIH scale but not high enough to receive money from the NIH for translational research. The idea being similar to a bridge grant, we give them funding to continue their research and collect additional data. They can then go back to the NIH with the additional data and, hopefully, receive a grant from the NIH. What is exciting is that the NIH grant will be much larger than what we provide.

Recently, PPMD awarded the first End Duchenne prize to Justin Fallon at Brown University. We were able to provide $271,000 in funding to continue research on Biglycan in the hopes that the resulting research will turn into a $5 million grant from the NIH. That is a pretty clever funding strategy, turning $271,000 into $5 million. One dollar of PPMD funding returns potentially $20 from the NIH. Where did PPMD get the $271,000? From your generous donations. But now we need more, we can't continue to award research grants if there is no money to give.

My goal is to raise $15,000 for research this year. We all know that this has been a very difficult year for many of our families and giving may not seem like a priority but please consider giving what ever you can. Any amount you can afford to give will help and we will be grateful. If you truly can't give right now please pass this along to someone who you think might be able to. From my marathon training I have come to realize that it does not matter the size of step you take towards the finish line only it's direction.

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Comment by Pat Furlong on January 6, 2009 at 2:46pm
Reading research has been a necessity for me as well... now nearly 25 years. It has been amazing to watch the base of knowledge expand, now laying the foundation for promising clinical trials, treatment and a cure. In addition, care has changed dramatically as well with improved/care and management, sort of 'tweaking' at both ends of the spectrum. Improving care to preserve and protect function and clinical trials to insure a future.
The economy is frightening for sure. LIke you John, I'm going to lace up my sneakers and keep moving forward, knowing that on certain days, I may have to walk slowly and carefully, but forward.

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