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Foundation for Prader-Willi Blog | Stories of Hope (3)

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Schaaf-Yang Syndrome Heroes Say, 'You Can do Hard Things!'

A special contribution by guest blogger Leslie Born “No degree, or training, or book, or conversation, could have ever prepared me to be the parent of a child with a disability.” – Amanda Griffith-Atkins These words ring so true that some days I can’...
April 19, 2022 Read More

Topics: Stories of Hope, SYS

FPWR Board President 'Find What Brings You Hope'

A special contribution by guest blogger Jeannine Kowal, FPWR Board President Share your story via our Stories of Hope Questionnaire. Caitlin's birth was uneventful. Caitlin's birth was induced at thirty‑nine and a half weeks because of growth concern...
February 22, 2022 Read More

Topics: Stories of Hope

Pushing Beyond Her Comfort Zone, PWS Mom Advocates for Child's Future

A special contribution by guest blogger Charlotte Kellar. Charlotte shared her story via our Stories of Hope Questionnaire. How has your child exceeded your expectations? Let me count the ways … To doubt your own child is one of the worst feelings in...
December 31, 2021 Read More

Topics: Stories of Hope

Grandma Takes One SMALL Step for PWS Research

A special contribution by guest blogger Diane Schantin When Austin was born, our whole family was up at the hospital celebrating. I vividly remember the nurses coming in to check his vitals, watching their faces and hearing, “Oh my God.” His blood su...
August 26, 2021 Read More

Topics: Stories of Hope

Dispelling the Myths Of Our Life With PWS

A special contribution by guest blogger Lisa Matesevac Our youngest child, Evan, was born in 2006. Little did I know what big changes were coming in our lives. I knew we would be outnumbered with three children. I knew we would have sleepless nights....
August 5, 2021 Read More

Topics: Stories of Hope

Hoops to End Hunger - 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. Jack was diagnosed with PWS when he was 3 weeks old. The news devastated our family and we could not begin to explain how fearful we were for our sweet bo...
March 12, 2021 Read More

Topics: Stories of Hope

Your Child Will Be Your Hero

A special contribution by guest blogger Lindsey Larson Elliot earned the nickname “hero” before he was even born. I was 20 weeks along with our triplets, and I had noticed our only boy (Elliot), hadn’t moved in quite some time. Concerned, I called my...
March 2, 2021 Read More

Topics: Stories of Hope

Why I Will Always Celebrate the Beauty of My Son’s Rare Disease

The last day of February is Rare Disease Day. This special guest blog by Rebecca was originally published on Rare Disease Day in 2016, and we're republishing to share with you this year. If you're inspired by her story, please consider making a donat...
February 26, 2021 Read More

Topics: Stories of Hope

'The Growth Was Within Myself': A PWS Mom Counts Blessings

A special contribution by guest blogger Joni Augustine. Joni shared her story via our Stories of Hope Questionnaire. How has your child exceeded your expectations? Branden was born 30 years ago, before there were so many wonderful resources. I was to...
November 16, 2020 Read More

Topics: Stories of Hope

About FPWR

The Foundation for Prader-Willi Research (federal tax id 31-1763110) is a nonprofit corporation with federal tax exempt status as a public charity under section 501(c)(3).

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The mission of FPWR is to eliminate the challenges of Prader-Willi syndrome through the advancement of research and therapeutic development.

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