Topics: Stories of Hope
A special contribution by guest blogger Tony Chambers When I was 10 years old, I realized I was never going to see my dad again. He didn’t die, he just packed up and disappeared one day. I was 4 when my mom knocked on his empty apartment door wonderi...
There are numerous hormones that are intricately involved in connecting the stomach to the brain and telling us when we are hungry or full. One of these hormones is ghrelin, which is often referred to as "the hunger hormone." Although individuals wit...
Topics: Research
Nikol Maher, mom to Jack, turned her fear into determination using the family's love of sports. Tell us about your family and how you connected to FPWR. Jack was diagnosed with PWS when he was 3 weeks old. The news devastated our family and we could ...
Topics: Stories of Hope
Family members and caretakers of individuals with PWS know that those individuals are often the friendliest people in a room, particularly when they are young children eager to give a hug. However, people with intellectual or developmental delays oft...
Topics: Research
While most of us spent this last Thanksgiving morning prepping a feast, watching football or entertaining family, Rachael Fischer and Julie Foge rose before the sun to host more than 850 runners for the 2nd annual Harvesting Hope 5K race. The event t...
Topics: Stories of Hope
FPWR is excited to share a new discovery in Prader-Willi Syndrome! Columbia University Medical Center researchers Lisa Burnett, PhD, and Rudolph Leibel, PhD, have published a breakthrough discovery in the Journal of Clinical Investigation that change...
Topics: Research
A special contribution by guest blogger Gwyn Spearman It starts with one SMALL step... That sums up our approach to dealing with our "new normal." We have taken small steps, toward big dreams, goals, hopes, and expectations for Ellie. First, we navig...
Topics: Stories of Hope
Any drug development process proceeds through several stages in order to produce a drug that is safe, efficacious, and has passed all regulatory requirements. The discovery phase converts what we have learned about the causes and the biology of the d...
Topics: Research
Sleep disturbances and daytime sleepiness severely impact the quality of life for many with PWS, as well as their parents and caregivers. Within the Global PWS Registry, about 50% of respondents report that their loved one suffers from excessive dayt...
Topics: Research