As posted on her website, Mayim Bialik shared her thoughts on the disease and her hopes for the Angel Drive to spur more support and research:
As many of you know, my doctoral thesis in Neuroscience focused on a genetic syndrome called Prader-Willi Syndrome (PWS). PWS, a spontaneous mutation in chromosome 15, occurs in one out of approximately every 15,000 live births. The most distinctive feature of the syndrome is the inability to feel full; because of this, PWS is the leading cause of genetic obesity.
Individuals with PWS typically need to live in environments with no access to food in order to prevent overeating and the complications that can result from never feeling full and always seeking out food. Individuals with PWS also demonstrate a range of behavioral challenges as well as other medical issues involving the heart, bones, and endocrine system. (For more, see the above video or click here.)
I have worked for many years – first as a graduate student and now as a public advocate – with the Prader-Willi Syndrome Association (USA) to raise awareness about this syndrome and provide help for families affected by PWS. PWSA USA has been saving and transforming the lives of individuals with Prader-Willi syndrome since 1975. They provide second-to-none research, crisis/family support, medical support and new parent mentoring. Last year they answered over 1,600 crisis calls and saw an unprecedented increase in the number of newly diagnosed children.
Please consider donating to PWSA (USA)’s Angel Drive campaign, where your donation will go towards providing these life-saving services and to help provide a better future to those affected by Prader-Willi syndrome. To make a donation, please go to: http://weblink.donorperfect.com/angel_drive
. For more information about PWS and PWSA-USA, click here