As Rare Disease Day approaches on February 28, we want to spotlight the extraordinary qualities of our children with Prader-Willi syndrome, celebrating their unique passions and contributions to the world. Our objective is simple: to inspire hope. We know our kids are more than their diagnosis, and we want to prove it.
Lucky for us, we didn’t have to look far to find great hope. In this special edition of HopeFull Highlights, three families share what makes their loved ones remarkable—their strengths, their dreams, and the joy they bring to those around them.
Meet Ethan, 7.
Written by Ethan's older brothers, Nate and Jake
Ethan loves anything Disney, including toys, movies, books and especially going to Disney World. He has a passion for animals, especially dogs. He dreams of one day being a zookeeper.
What do you love about being Ethan's brothers?
We love being Ethan’s big brothers because he brings fun and silliness to our family. Our favorite things to do with him are to play hide and go seek and to play video games, especially his favorite, Super Mario Brothers. He starts every day off with a running hug, telling us how much he loves us. There is nothing we wouldn’t do to help our little bro.
Why do you support FPWR?
For our mitzvah project, we are running a 5K race in honor of Ethan with the hopes of raising money for the Foundation for Prader-Willi Research. Fundraising for PWS is extremely important to our family because we believe there is hope for Ethan and all the PWS warriors. With the support and research from FPWR, there is hope for our loved ones to live happy, full lives. Failure is not an option.
Meet Samantha, 19.
Written by Eisa Rosas, Samantha's mom
Samantha has always loved learning and school, art and spending time with friends and family, especially watching scary movies and playing board games and puzzles. Family game night is one of her favorites!
What do you love about being Samantha's mom?
Samantha is always so positive! She is always up for trying new things and has a warm, loving disposition. She gives everything her all. And as my #1 sidekick, I truly just love hanging out with her, doing our Starbucks runs, going on errands—she is so helpful. She makes me proud every day!
Tell us about a recent milestone.
Samantha has always been a hardworking student. And now that she is in college, that has not changed. She has made the Dean's Honor List (3.0+) her last 3 semesters and will do it again this semester. She is almost done (5 more classes!) and will soon graduate with her AA Degree and will transfer to California State University, Fullerton. We are so proud of her hard work and dedication!
"Where there is life, there is hope!" Our loved ones with PWS amaze me every day and I am grateful for all the research FPWR is a part of. Because of this, there is a light at the end of the tunnel.
Meet Benício, 18 months.
Written by Gaby, Benício's mom
He loves music, instruments, and animals. I admire his resilience, love and joy!
What do you love about being Benício's mom?
We are so proud of him! He is starting to crawl and take steps with support.
What is your hope for the future?
My hope for his future is that he never loses hope. That he can reach and achieve anything that he wants. My hope is that he can grow with better opportunities and new possibilities that would help him develop against all odds.
Celebrate Rare with Us!
As we advocate for those affected by rare disease, let’s hold onto the belief that we can make a difference. Rare is hopeful, inspiring, unlimited—and so much more. Together, let's celebrate every extraordinary individual in our community.
Celebrate Rare with us with our Rare Disease Day Toolkit. Discover simple ways to:
✅ Raise awareness
✅ Share your story
✅ Make an impact
Together, we inspire hope, amplify voices, and work toward a future where every individual—regardless of diagnosis—is recognized for the extraordinary qualities that make them uniquely beautiful.
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