Foundation for Prader-Willi Blog (54)

Everything and More: A Father's Journey Into the World of PWS

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...

February 17, 2017 Read More

Topics: Stories of Hope

Identifying the Role of the 'Hunger Hormone' Ghrelin

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...

February 14, 2017 Read More

Topics: Research

How One Family Turned March Madness into PWS Awareness

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 ...

February 10, 2017 Read More

Topics: Stories of Hope

New Study on Social Functioning Intervention for Young Adults with PWS

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...

February 7, 2017 Read More

Topics: Research

Harvesting Hope for PWS: Rachael Fischer and Julie Foge

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...

February 3, 2017 Read More

Topics: Stories of Hope

Study Ties PWS Characteristics to PC1 Enzyme Deficiency [VIDEO]

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...

February 2, 2017 Read More

Topics: Research

The Changing Force of My Daughter's Future ... Me

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...

January 27, 2017 Read More

Topics: Stories of Hope

De-Risking PWS Drug Development Through Preclinical Screening

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...

January 25, 2017 Read More

Topics: Research

Identifying the Neurobiology Behind Sleep Issues in PWS

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...

January 23, 2017 Read More

Topics: Research

FPWR Blog

Categories

Everything and More: A Father's Journey Into the World of PWS

Identifying the Role of the 'Hunger Hormone' Ghrelin

How One Family Turned March Madness into PWS Awareness

New Study on Social Functioning Intervention for Young Adults with PWS

Harvesting Hope for PWS: Rachael Fischer and Julie Foge

Study Ties PWS Characteristics to PC1 Enzyme Deficiency [VIDEO]

The Changing Force of My Daughter's Future ... Me

De-Risking PWS Drug Development Through Preclinical Screening

Identifying the Neurobiology Behind Sleep Issues in PWS

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