Foundation for Prader-Willi Blog (59)

Don't Worry About the Small Stuff and Be Patient

A special contribution by guest blogger Teri Douglas Teri shared her story via our Stories of Hope questionnaire.

March 3, 2017 Read More

How to Address the Challenges of Developing PWS Therapies

Prader-Willi syndrome (PWS) is a complex disorder, and, to date, supportive care and growth hormone therapy are the only treatments available. The rarity of PWS, the fragmentation of experts and stakeholders involved at each stage of therapeutic deve...

March 1, 2017 Read More

Topics: Research

There is Goodness and Hope Up Ahead

A special contribution by guest blogger Anna Beasley Anna shared her story via our Stories of Hope questionnaire. How has your child exceeded your expectations? In so many different ways, she just keeps fighting. We weren't given a lot of hope at fir...

February 24, 2017 Read More

Topics: Stories of Hope

Temperature May Impact Gene Expression in Mice During PWS Research

There are several mouse models used in PWS research, each missing some part of the DNA that is absent in PWS. Two of the most commonly used mouse models are the Snord116 mouse and the Magel2 mouse. Each of these has a deletion of the respective PWS-r...

February 22, 2017 Read More

Topics: Research

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

FPWR Blog

Categories

Don't Worry About the Small Stuff and Be Patient

How to Address the Challenges of Developing PWS Therapies

There is Goodness and Hope Up Ahead

Temperature May Impact Gene Expression in Mice During PWS Research

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

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