julieakc
08-23-2008, 03:47 AM
10/8 - Update
Sorry for the delay in updating everyone, I was gone most of September but now that I am home I wanted to take a few minutes to let you know what happened with the American Express Members Project Contest.
First, a huge thank you to all those who voted for the 'Fight Obesity with a Cure for PWS" project submitted by a fellow mom whose young son also has Prader-Willi Syndrome, and to all of you who spread the word. It was a very remarkable and fast rise in votes thanks to a grassroots spreading the word that led the project to end up with such a high ranking.
Unfortunately although the project ranked #16 in total votes the committee did not approve the project to move to the second round of voting. Several other projects for rare disorders that also received votes to rank in the top 25 were likewise passed over to move on to the second round. It was a very disappointing decision for all of us in the PWS community as I'm sure it was to the other disorders. It appears that American Express and their committee do not fully realize the huge impact that a large amount of money would have on a rare disease.
There is a very good article on about.com about this situation; the author describes it far better than I could so I encourage you to read the article: http://specialchildren.about.com/b/2008/09/24/more-special-needs-projects-dissed-by-american-express.htm (http://specialchildren.about.com/b/2008/09/24/more-special-needs-projects-dissed-by-american-express.htm) And as mentioned in this article she indicates that she will do an article on each of the disorders that was passed over by the American Express Members Project. The spotlight article for Prader-Willi Syndrome was posted today and it was quite good: http://specialchildren.about.com/b/2008/10/08/celebrating-top-members-project-vote-getters-spotlight-on-prader-willi-syndrome.htm
Next month I will continue my personal quest to raise funds and awareness for Prader-Willi Syndrome by participating in the 3rd Annual Los Angeles Walk to raise funds for FPWR (Foundation for Prader-Willi Research). More information will be coming soon.
FPWR and PWSA (Prader-Willi Syndrome Association) will both be on alert for the American Express Members Project next year and perhaps with a more specific and targeted research project we will have a better chance at making it to the final round.
Again, thank you for your support.
Julie
******************
Please take a couple moments to vote for this project and help the future of my son and all the other kids out there with Prader-Willi Syndrome. And spread the word and ask everyone you know to vote too.
A fellow PWS mom entered this project into American Express's contest.
Prader-Willi Syndrome gets very little funding for research in comparison with other diseases/syndromes and yet with adequate funding appropriate treatments and maybe even a cure are within our reach.
Here's the website: www.membersproject.com/project/view/NM35HQ (http://www.membersproject.com/project/view/NM35HQ)
Learn more about this very serious syndrome at www.pwsausa.org (http://www.pwsausa.org) or feel free to ask me questions.
Thanks!!!
ETA - Deadline for voting is 9/1
Sorry for the delay in updating everyone, I was gone most of September but now that I am home I wanted to take a few minutes to let you know what happened with the American Express Members Project Contest.
First, a huge thank you to all those who voted for the 'Fight Obesity with a Cure for PWS" project submitted by a fellow mom whose young son also has Prader-Willi Syndrome, and to all of you who spread the word. It was a very remarkable and fast rise in votes thanks to a grassroots spreading the word that led the project to end up with such a high ranking.
Unfortunately although the project ranked #16 in total votes the committee did not approve the project to move to the second round of voting. Several other projects for rare disorders that also received votes to rank in the top 25 were likewise passed over to move on to the second round. It was a very disappointing decision for all of us in the PWS community as I'm sure it was to the other disorders. It appears that American Express and their committee do not fully realize the huge impact that a large amount of money would have on a rare disease.
There is a very good article on about.com about this situation; the author describes it far better than I could so I encourage you to read the article: http://specialchildren.about.com/b/2008/09/24/more-special-needs-projects-dissed-by-american-express.htm (http://specialchildren.about.com/b/2008/09/24/more-special-needs-projects-dissed-by-american-express.htm) And as mentioned in this article she indicates that she will do an article on each of the disorders that was passed over by the American Express Members Project. The spotlight article for Prader-Willi Syndrome was posted today and it was quite good: http://specialchildren.about.com/b/2008/10/08/celebrating-top-members-project-vote-getters-spotlight-on-prader-willi-syndrome.htm
Next month I will continue my personal quest to raise funds and awareness for Prader-Willi Syndrome by participating in the 3rd Annual Los Angeles Walk to raise funds for FPWR (Foundation for Prader-Willi Research). More information will be coming soon.
FPWR and PWSA (Prader-Willi Syndrome Association) will both be on alert for the American Express Members Project next year and perhaps with a more specific and targeted research project we will have a better chance at making it to the final round.
Again, thank you for your support.
Julie
******************
Please take a couple moments to vote for this project and help the future of my son and all the other kids out there with Prader-Willi Syndrome. And spread the word and ask everyone you know to vote too.
A fellow PWS mom entered this project into American Express's contest.
Prader-Willi Syndrome gets very little funding for research in comparison with other diseases/syndromes and yet with adequate funding appropriate treatments and maybe even a cure are within our reach.
Here's the website: www.membersproject.com/project/view/NM35HQ (http://www.membersproject.com/project/view/NM35HQ)
Learn more about this very serious syndrome at www.pwsausa.org (http://www.pwsausa.org) or feel free to ask me questions.
Thanks!!!
ETA - Deadline for voting is 9/1