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Foundation for Prader-Willi Blog | Stories of Hope (7)

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Your Child With PWS Can Have a Beautiful Life

A special contribution by guest blogger Loraine Hernandez When Mila was born, everything felt uncertain. The early days were marked by fear, unanswered questions, and a hospital experience that left her mother struggling to imagine what the future mi...
July 7, 2017 Read More

Topics: Stories of Hope

For This Dad, PWS Means Exceeding Expectations

A special contribution by guest blogger Blake Brenneman When our son, Evan, was diagnosed with Prader-Willi syndrome (PWS), I assumed his progress would be slow. But he has exceeded every expectation. At just 15 months old, his understanding of the w...
June 30, 2017 Read More

Topics: Stories of Hope

Mom's Message to PWS Parents: Pride and Love Will Fill Your Heart

A special contribution by guest blogger Laura Capone When Tommy was born, his parents were given a long list of things he might never do. The outlook for his future felt uncertain, filled with low expectations and what-ifs. But years later, Tommy has...
June 23, 2017 Read More

Topics: Stories of Hope

A Father's Story: Fighting the PWS Battle With Shared Love, Clear Vision

A special contribution by guest blogger, dad, and One Small Step host Adam Larson An expectant father has a crystal clear vision. You are at the moment when all you will ever amount to is about to be tested. All of your talents will be called upon, a...
June 9, 2017 Read More

Topics: Stories of Hope

Mom Sees Past Obstacles of PWS to Find Hope In Research and Community

A special contribution by guest blogger and One SMALL Step Washington, DC, co-host Dominique Deleage Our son Charlie is now 10 years old. We found out that he had PWS when he was three weeks old. We had never heard of the disorder. I still remember t...
June 2, 2017 Read More

Topics: Stories of Hope

My Dreams Are Bigger Now Than Before My Son's PWS Diagnosis

A special contribution by guest blogger Laura Hollatz I am a dreamer. Always have been, and always will be. When I was a little girl, I wanted to be Wonder Woman. I also dreamt of living in a huge castle with all my friends that was made out of candy...
May 24, 2017 Read More

Topics: Stories of Hope

Our Grandchild With PWS Is Our Shining Star, Our Lovebug, Our Hero

A special contribution by guest bloggers Amy and Bob Chipetz Brandon will be 5 years old on May 24. We remember seeing him, our first grandson, shortly after birth. We were all so elated about the arrival of our daughter and son-in-law's firstborn. W...
May 19, 2017 Read More

Topics: Stories of Hope

Mom's Advice for PWS Parents: 'Watch Your Baby Fly!'

A special contribution by guest blogger Jennifer Terranova We all have dreams when we plan a family. We all believe our babies will be the cutest, sweetest, most amazing little things in the whole wide world. We are all determined that our future lit...
May 12, 2017 Read More

Topics: Stories of Hope

Happy Dreams Return for Mom, as Baby Becomes Little Boy

A special contribution by guest blogger Becky McWilliams When I became pregnant with my second child, I had endless dreams. I dreamt about whether this mysterious little being would be a girl or another boy. I dreamt about the relationship that he or...
May 5, 2017 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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