I have to admit SCIENCE was NOT my best subject growing up, and I always thought, “well, I won’t really need it in the future anyway”!! Boy, was I wrong! Here I sit with a daughter with Prader-Willi Syndrome, trying to raise money for its research… and hence, SCIENCE!
Having just attended the Foundation for Prader-Willi Syndrome Research’s Scientific Day in Indianapolis, I must tell you that most of the SCIENCE is STILL over my head! BUT, what I do understand is that without it, Siena would not be where she is today. The researchers and scientists that are funded through FPWR are CHANGING THE FUTURE for those living with Prader-Willi Syndrome. And while I may not have understood every “sciencey” word, I had to hold myself back from running up and hugging each and everyone of the doctors and scientists for dedicating their lives to making a difference in ours. They are truly celebrities to us!
So now, since I am helping to promote the 2nd Annual Philly Live Life Full Gala being held on December 2nd to benefit the Foundation for Prader-Willi Syndrome Research, I thought I might help you all to understand what exactly the gala will help fund! From Endocrinology to Mental Health to Obesity the project categories are diverse to cover all the many challenging symptoms associated with PWS.
The first project I would like to introduce is one I found extremely interesting that was presented by Tony Holland, MD, and involves vagus nerve stimulation to help treat temper outbursts and emotional dysregulation that characteristically affect people with PWS.
Here is the link to read more about Dr. Holland’s project. https://www.fpwr.org/fpwr-funded-projects/proof-of-concept-study-of-vagus-nerve-stimulation-from-an-external-device-in-pws-year-2/
Thank you for reading and hope this will help you get excited about raising money for research!! OH!!! And EARLY BIRD TICKETS ARE NOW AVAILABLE FOR THE GALA!