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DECEMBER 2008

Parents’ Quest for a Cure
By Benjamin Seckler, M.D. & Tracy Kramer Seckler

We have just returned from Cape Cod, where we were the guest speakers at the CombinatoRx corporate retreat. The DMD research team at CombinatoRx, one of our biotechnology partners, is conducting cutting-edge research to develop a treatment for Duchenne. They search through thousands of combinations of FDA-approved drugs to determine if any of the compounds can work in tandem to benefit boys with DMD.

Spending time with the CombinatoRx team was significant for both partners. The scientists and executives were moved and motivated by our personal story. In addition to putting a personal face on the disease by sharing anecdotes about Charley, we also presented the well-laid out plans that Charley’s Fund is executing to systematically end DMD.

On our end, funding medical research can seem esoteric compared to other causes that provide immediate, direct services like a new house for a homeless family or a meal for a hungry child. It was extremely affirming to meet the highly motivated, super-smart team of scientists working on our project. They are diligently sticking to the timeline laid out in our contract, making steady, sure headway in their search for a new treatment for DMD.

A huge thank you to CombinatoRx for inviting us to speak to the entire staff. We’re equally grateful to them for allowing us to stay on the Cape for an extra day, giving us a much-needed 24-hour respite from kids, Charley’s Fund work, house-building, and the intensity of our every day life!

As always, thank you for taking the time to read our monthly update and caring about our quest to save lives and make DMD history. Please be sure to check out further updates online at http://www.charleysfund.com/blog/ and forward our email updates to friends, family and colleagues so we can continue to expand the Charley’s Fund family.#

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