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Saturday, March 31, 2012 |
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Post via the Lend a Helping Wing Fundraiser: Lend a Helping Wing
Fellow Angelman Community Members:
As you know, the Minocycline Clinical Trial is about to begin. Twenty-four children with Angelman Syndrome, now affectionately known as The Tampa Twenty-Four, have been selected to participate in this potentially life changing trial. Each family participating in the trial must travel to Tampa, Florida, USA three separate times, at their own expense, as a part of their commitment to the trial. While many of us applied to participate and were not selected, and many of us could not apply due to the expenses involved, we can all contribute to help defray the significant costs to the families who were selected and were willing to make the sacrifice for the good of the whole community.
While each family's costs will vary, our goal is to raise a minimum of $3,000 per family, or $72,000.00. $120,000 would be even better. This may sound ambitious; but it is the Angelman community, and their friends, family and loved ones, a formidable and supportive force, that have brought us all to this point in time. We can all participate in our own way in this groundbreaking trial, by making it possible - and less expensive - for those who will actually be taking part. These raised funds are in addition to the $1,000 provided to each family by FAST. One organization can only do so much: We, the Angelman community, through this grassroots effort, can do the rest!
Please give generously and ask those around you to give generously. This could literally be a historical moment in Angelman Syndrome history and YOU can help make it happen.
For more information, including disbursement schedules, details on fund management and other specifics, please click here.
Sincerely,
Marc Bissonnette
Dale Jackson Van Hal
Tony Vidray
Go to: Lend a Helping Wing to donate. Thank you all in advance! Lets get all the families to Tampa! We should all be excited about what is to come and not have to be worried about the financial burden that some could potentially face, while trying to get there. I have faith that we CAN make this happen for all the participants!! :) |
posted by angelwings
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12:13 AM
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