In the summer of 2004, when Whitney, my daughter, was diagnosed with 1p36 Deletion Syndrome, there were very few resources to turn to for support and helpful information. That's one of the reasons I began chronicling our adventures on this blog. Today, a wonderful non-profit organization has taken up this cause. 1p36 Deletion Support & Awareness (1p36 DSA) is working to better support families affected by this medical condition and to better educate the medical community and the public about what is the most common genetic deletion.
All of this work takes funding and 1p36 DSA has applied for a fifty thousand dollar grand from the Pepsi Refresh Project. But we need your help. Grants are only given out to top vote getters. Please visit www.refresheverything.com and create an account. Then, starting August 1st, please vote for 1p36 Deletion Support & Awareness each day of the month. At the end of August, the votes will be tallied and grant winners will be announced.
This money can make a huge difference to families who may be affected by 1p36 Deletion Syndrome and they may not even know it. Huge percentages of patients go undiagnosed and untreated because this syndrome and the tools to diagnose it are still so unknown. But you can change that. Please vote! Whitney and our family thank you.
No comments:
Post a Comment