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Foundation for Prader-Willi Blog | Stories of Hope (4)

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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

I’ve Spent My Life Preparing For This: PWS Mom Shares Sources of Strength

— A special contribution by guest blogger Jacquelyn K. Jacquelyn shared her story via our Stories of Hope Questionnaire.
October 26, 2020 Read More

Topics: Stories of Hope

With PWS Research, There Is Renewed Hope for Peyton

On April 18th, 2012, our beautiful daughter, Peyton, was born. At 5lbs, 7oz, she was little, but everyone thought she was just weak and that she would get stronger as she grew. Peyton was not strong enough to nurse and she struggled with a bottle. We...
October 20, 2020 Read More

Topics: Stories of Hope

We Celebrate Our Life with PWS

A special contribution by guest blogger Jennifer Lee Three little words changed our lives forever: Prader-Willi syndrome. Jhett was 23 days old. He had spent his life to this point in the NICU. We knew we were testing for PWS, and due to my research ...
August 11, 2020 Read More

Topics: Stories of Hope

Once She Sets Her Mind to Something, Nothing Can Stop Her!

A special contribution by guest blogger Alice Shapley Our beautiful and amazing 7‑year‑old daughter Anna has Prader‑Willi syndrome (PWS). There are so many things for which I am incredibly, deeply proud of Anna, but today I want to talk about the rol...
May 14, 2020 Read More

Topics: Stories of Hope

Fundraising for PWS Research Has Empowered Our Family

A special contribution by guest blogger Felicia DiMuccio Growing up, I was never quite sure what I wanted to be, but I always knew I wanted to be a mom. Finding out I was pregnant with Siena was a dream come true, and I couldn't wait for her to enter...
April 8, 2020 Read More

Topics: Stories of Hope

PWS Research Provides the Hope We Desperately Needed As New Parents

A special contribution by guest blogger Natalie Brenneman Evan emerged into the world lifeless and blue. I remember watching my husband shifting back and forth on his tiptoes behind the medical team working to resuscitate him. “It’s a boy!” he finall...
February 18, 2020 Read More

Topics: Stories of Hope

Two Moms Harvest Hope With 5K for PWS Research

While most of us spend Thanksgiving Day, relaxing, watching football or entertaining family, Rachael Fischer and Julie Foge rise before the sun to host the Harvesting Hope 5K run. Since 2015 these two amazing, determined women have hosted this family...
November 12, 2019 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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