|
 |
|
Saturday, March 31, 2012 |
|
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
@
12:13 AM
  |
|
|
|
|
| About Brady |
Read Brady's Story Here
I am 11yrs old and I have Angelman Syndrome. I may have this syndrome, but I dont let it hold me back. I love life and live it to the fullest every single day.
My mom says that our research organization, Foundation for Angelman Syndrome Therapeutics, is working really hard on a treatment or even a cure for me and my friends. I am thankful to have 25 words but I look forward to the day that I can carry on long conversations and talk so much that everybody has to ask me to please be quiet for a few minutes :) Anyway, mom says Im awesome and super funny and I have to agree,lol.
See my complete profile
Home
Post
Edit |
What is Angelman Syndrome?
Trial update
Clinical Trials Update
Okay, just time for one more post! I was sifting t...
Well just had a moment and thought I would update....
Well we are back!! Lots of exciting things happeni...
Hello everyone!!!! First let me just apologize for...
Hello All!!!!Now that life has slowed down a bit, ...
Well its been a little while since we updated, so ...
Well things are going great here!! brady is back t...
Hey guys! Im proud to report that things have been...
|
| Archives |
|
Interactive Seizure Diary |
This
downloadable Interactive Seizure Diary helps you track your seizure activity and medication routine. You can also record doctor appointments and notes about how you are feeling. Before a doctor appointment, print the information and share it with your physician.
|
|
Angelman
Forum & Chat |
|
The AS Forum was created in April
2005 and provides an easy way for family members and carers of
people with Angelman Syndrome (AS) to exchange information with each
other.
|
|
Cure Angelman Syndrome |
|
The Foundation for Angelman Syndrome Therapeutics (or FAST) is an organization of families and professionals dedicated to finding a cure for Angelman Syndrome and related disorders through the funding of an aggressive research agenda, education, and advocacy.
|
| Angelman Links |
|
| |
