“Fundraising is so much more than just about money. Fundraising is really about advancing awareness and support, and making an impact on those brilliant minds out there that are going to develop the cure that we are all desperate to find - that is what is ultimately going to get us to the finish line of finding the solution that will get our kids the relief they so desperately need."
-Jess (Stella’s Mom)
Team Stella Strong began as a small circle of friends and family coming together to support Stella on her rare genetic disease journey. What started as love for one child has grown into a mission to uplift and empower countless families facing similar diagnoses.
Today, we are proud to announce the formation of the Cure Rare Foundation, created to accelerate the path toward cures — especially through the groundbreaking potential of gene therapy. Our goal is simple but urgent: to improve the lives of children and families living with rare genetic disorders by funding research, supporting advocacy, and amplifying the voices of those who are too often overlooked.
Your gift directly fuels this mission. Every donation helps drive scientific discovery, expands support for families navigating complex medical challenges, and brings us closer to a world where “rare” no longer means “without answers.”
The Foundation’s 501(c)(3) status has been officially approved, and our full website is currently under development. In the meantime, please use the link below to make your tax-deductible donation to the Cure Rare Foundation.
Thank you for helping us turn Stella’s story into a movement of hope, progress, and possibility for all rare disease families.
This website was first created by Stella’s aunt, Sara, whose love and vision helped build the foundation of what Stella Strong is today. Sara passed away very unexpectedly and far too soon. Her loss is immeasurable, but her kindness, creativity, and belief in Stella’s story continue to guide everything we do.
Sara poured her heart into building this online space — a space filled with hope, community, and determination. Her spirit lives on in every effort we make to help children and families affected by rare genetic disorders.
We honor her legacy with every family we support and every step we take toward cures.
