Our Journey Raising Two Children with Special Needs

This blog chronicles our life raising two children, Nicholas 14, diagnosed with Prader-Willi Syndrome and Weston 17, diagnosed with Autism/Asperger's/ADHD. It's the ups, the downs, the joys, the sorrows and most importantly, the beauty of living a life less perfect, a life more meaningful.




Tuesday, June 19, 2012

Thank you to the State of Connecticut

The State of Connecticut announced today that it will fund $9.8 million in grant money to 19 stem cell researchers in the state. One of those researchers is Stormy Chamberlain, PhD, an assistant professor of genetics and developmental biology at UConn Health Center.

She will receive a grant of $450,000  for a three year project to develop new therapies for Prader Willi Syndrome and Angelman Syndrome. Both are rare genetic syndromes that are caused by interruptions of the 15th chromosome.

Dr. Chamberlain explains,

"The state funding really helps rare diseases because the foundations that typically fund their research are limited," she said, adding that support often is limited to fundraisers organized by families of those with the conditions.

Dr. Chamberlain is correct. Fundraising for PWS is almost exclusively performed and coordinated either through national and state PWS organizations or by families of diagnosed individuals. Since it is such a rare disorder, few folks are aware of this syndrome. This effects the ability of these organizations to raise the much-needed funds to help find a cure for this disease that causes an individual to develop an insatiable appetite.

So, on behalf of all individuals diagnosed with PWS and their families, thank you Connecticut and thank you Stormy Chamberlain, PhD. Bravo!

To learn more about Stormy and her motivation for working with PWS, click here.

We are so very grateful!

If you are interested in donating to find a cure to Prader Willi Syndrome,  please visit:
www.pwsausa.org

Thank you for your consideration.