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Foundation for Prader-Willi Blog | Stories of Hope (2)

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‘He Shows Me Everyday What a True Superhero Looks Like’ Says PWS Mom

A special contribution by guest blogger Heather Osterman. Max came into the world with a bang...or more accurately, a limp body, not breathing, and blue. I went from being induced, since Max was quite cozy where he was, to a long labor, to an emergen...
May 31, 2023 Read More

Topics: Stories of Hope

‘The Amount of Love and Light He’s Brought to Our Lives Is Immeasurable’

A special contribution by guest blogger Rebecca Noel On May 25th our beautiful son Bron arrived to our tears of joy. He was so tiny and precious, and needed time in the NICU. He seemed to be making wonderful progress and we were full of hope. We had ...
May 2, 2023 Read More

Topics: Stories of Hope

'She Is Tough, She Is a Fighter' Says PWS Mom Inspired by Daughter

A special blog contribution from Krysten Leighty. Krysten shared her story via our Stories of Hope Questionnaire.
March 2, 2023 Read More

Topics: Stories of Hope

‘The Small Stuff Doesn’t Matter’: A Story of Hope from Sheri Mills

A special blog contribution from Sheri Mills. Sheri shared her story via our Stories of Hope Questionnaire.
January 26, 2023 Read More

Topics: Stories of Hope

‘She’s Changed Our Family Forever’: Claire Carucci’s Story of Hope

A special contribution by guest blogger Claire Carucci. Our 17-month-old daughter Caroline has Prader-Willi syndrome (PWS), and it has forced me to be stronger than I ever thought I would need to be. When I was looking at this little baby in the hosp...
September 20, 2022 Read More

Topics: Stories of Hope

'Change Invites Us to Reimagine, and That’s Such a Gift' Says PWS Hero

A special contribution by guest blogger Julie Foge Eliza turned eight this month, and it’s hard to put into words just how much our life has changed in that span of time. I knew it would the moment we got her diagnosis, of course, but it didn’t happe...
August 30, 2022 Read More

Topics: Stories of Hope

​​Why I’m Crossing the Globe for FPWR’s Annual Conference

A special contribution by guest blogger Will Greene When our son Ari was diagnosed with Prader-Willi syndrome in January 2022, FPWR emerged as a beacon of hope in our caregiver journey. That’s why I’m making the long trip from Singapore to Chicago to...
August 5, 2022 Read More

Topics: Stories of Hope, Parents

'It's a Decade of Declan!' Says PWS Hero and Mom

A special contribution by guest blogger Allison Shelton On the occasion of Declan’s tenth birthday this past April 14th, I wrote, “It’s a decade of Declan!” More completely, it has been a decade of our family living in the world of Prader-Willi syndr...
June 1, 2022 Read More

Topics: Stories of Hope

‘Most exceptional human being that I know’: Mom Inspired by Son with PWS

A special contribution by guest blogger Rebecca Krylow. Rebecca shared her story via our Stories of Hope Questionnaire. How has your child exceeded your expectations? Joey is truly the most exceptional human being that I know. He is kind; considerate...
May 4, 2022 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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Foundation for Prader-Willi Research
Phone: 888-322-5487
Email: info@fpwr.org

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Covina, CA 91723

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