OUR STORY

We are Victoria and Bill Strong. We have 3 beautiful daughters and live in the quaint city of Santa Barbara in California. Our oldest, Gwendolyn, was born in 2007 and is the inspiration behind everything we do. At 6-months-old, Gwendolyn was diagnosed with Spinal Muscular Atrophy or SMA. We were told: “There is no treatment. No cure. Nothing you can do.” Believing everyone can make a difference, we soon launched into advocacy and a dedication to create change, turning our devastating pain into purpose. Our NEVER GIVE UP.

Gwendolyn, meanwhile, thrived beyond expectation. Though medically fragile and profoundly disabled, she possessed an exuberance for life and a determination to just be one of the kids. She went to school, had many friends, danced hip-hop, ran half marathons, adored reading, loved adventures and travel, and inspired kindness wherever she went. We lived big when we could and cherished the simplest of gifts along the way. Gwendolyn died at the age of 7, but her legacy carries on fiercely, giving us and countless others the courage to NEVER GIVE UP.

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Thanks to our work, SMA is a CHANGED disease.

From the beginning, our goal has been to fill in the gaps and do what isn’t being done. We funded cutting-edge research around the globe, spearheaded the Emerging Investigator Awards designed to recruit the next-generation of research leaders, and lobbied for increased Congressional support. Our work played a pivotal role in changing SMA and SMA now has multiple incredible treatments and a groundbreaking gene-therapy ‘potential’ cure for newborns, with more progress to come. Federal legislation we helped pass created an easier path to clinical trials for all rare diseases. And SMA was Federally added to newborn and carrier screening recommendations.

Today, in tribute to the kindness and inclusivity Gwendolyn inspired wherever she went, we are building the first fully inclusive playground in Santa Barbara so all children have the opportunity to just be one of the kids. Gwendolyn Strong Foundation also continues to offer practical family support for the overwhelming expenses of life with a disability, helping give families greater independence. And we work to inspire courage through our brand, NEVER GIVE UP. As Gwendolyn taught us, we ALL have a reason to dig deep, do hard things, and live with a greater purpose.  What is your reason to NEVER GIVE UP?

One person can make a difference, and everyone should try.

WHAT WE DO

At Gwendolyn Strong Foundation, we work to fill in the gaps needed to create real change and build a more inclusive future for those with disabilities.

We provide practical family support, fund research, and are building the first inclusive playground in Santa Barbara. We work to inspire courage, foster inclusion and create a kinder world around the globe.

And above all else, we NEVER GIVE UP.  

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