We have a busy few days ahead of us. Doctors appointments for Charlie and for me, plus school and Christmas stuff. I’m sure my schedule is no different than most of yours this time of year! But I wanted to take a second to let you know, if you don’t already, about my personal “parent project” for 2009.

After being so moved by this summer’s conference, I am helping PPMD raise money to support other educational workshops on topics such as Endocrine and growth issues. For me it is a tangible way to help my boys. I have set a fundraising goal of $8,000 to aid future education projects. My family is especially interested in encouraging experts to examine the effects of Human Growth Hormone on boys with Duchenne, in hopes that parents will be able to weigh this information and make informed choices on care.

We are all working our way through incredibly difficult economic times and I know the holidays are especially tough. But if you do have a little bit that you can give to PPMD and are interested in the same new treatments we are, please visit https://secure2.convio.net/ppmd/site/Donation?ACTION=SHOW_DONATION_OPTIONS&CAMPAIGN_ID=2882.

Thanks and happy holidays!

The Driscolls

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Comment by Pat Furlong on December 22, 2008 at 10:16am
Hello Jenny,
The word "education' often seems a little unsexy (is that a word?) compared to an investment in research, but here's the thing. Without education, we will not make progress. Education is a broad word and it crosses the spectrum and bridges research and clinical trials. It is something we can do right now, explore immediate possibilities for our sons. In parallel to this year's conference, clinicians will meet to discuss Endocrine issues in Duchenne. They will discuss Human Growth Hormone, Testosterone to induce puberty and bone density. The goal of the meeting is to develop a clinical research protocol for willing clinical sites to consider. We are in process of organizing a meeting with pediatric rheumatologists as they commonly treat kids with drugs with the potential to impact Duchenne as well. It is about looking under every rock for answers... and that requires education.
Count me in Jenny.
Warm regards,
Pat

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