Topics: Stories of Hope
“Happy 30th Birthday to you, Keegan Johnson, and, by the way, your son has Prader-Willi syndrome!” Although the news wasn’t delivered in song, that was what was presented to Keegan and Tanya Johnson on the day they planned to celebrate Keegan’s first...
By Emma Roth and Lauren Schwartz-Roth, FPWR Board Member Lauren Roth and her daughter, Emma, share their experience of participating in the Oxytocin Clinical Trial at Vanderbilt University. Join this duo through their journey and learn more about the...
Topics: Research
Recently we asked members of our One SMALL Step facebook page to share their reason for hosting a One SMALL Step event. Here are their top ten reasons. Hosting an event is like teaching a school lesson....the one that often learns the most is the tea...
Topics: Research
2014 is starting with a BANG! Several new PWS clinical trials will be beginning around the country will be evaluating potential therapies for PWS for children and adults with PWS. The active involvement of our community will be critical to seeing the...
Topics: Research
Considering the complex neurological basis of PWS, one major hurdle in conducting PWS research is obtaining neurons, i.e. studying neurons without taking brain samples. Pluripotent stem cells are a phenomenal resource as they can be coaxed into becom...
Topics: Research
Over 260 people attended the 1st Annual New York City Live Life Full Gala held November 15, 2013 at the historic India House in lower Manhattan. The event included cocktails & hors d’oeuvres, food stations, live jazz, a silent auction and a live ...
Topics: Research
One well established characteristic of PWS is altered development and function of reproductive systems. This can include hypogonadism; under-development of sexual organs, particularly the testes in males; precocious puberty; and infertility.
Topics: Research
A fascinating new paper has turned PWS genetics on its head, and has important implications for understanding the underlying disruptions that cause PWS. As anyone who is familiar with PWS knows, the genetics of this disorder is very complex.
Topics: Research
FPWR, along with Dr. Jennifer Miller and Janalee Heinemann, Director of Research and Medical Affairs, Prader-Willi Syndrome Association (USA), would like to share a reminder with families:
Topics: Research