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.
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.
We have partnered with the City of Santa Barbara and Parks and Recreation to create the first inclusive playground in our region. We believe all children should have the opportunity to get to be one of the kids, to be at the center of fun, to belong. We think public playgrounds should celebrate our differences and the many ways we learn, and set the standard of the more tolerant, cooperative, and compassionate society that we all deserve.
We have provided practical support to over 600 families around the world to help with the overwhelming expenses of life with a profound disability and offer opportunities for greater accessibility to live life to the fullest.
We’ve shared our story in news outlets across the country, including The New York Times, Today Show, and NPR. We build campaigns that educate about the everyday lives and needs of people who live with disabilities. We also advocate for policies that help address these challenges. Thanks to your voices, we passed federal legislation that streamlined the clinical trial process for all rare disease studies. This enables researchers to better create successful treatments, as they did for SMA.
We have funded over 35 different researchers at 15+ institutions around the globe, such as Harvard, Columbia, Oxford, and the Ottawa Hospital Research Institute. We work directly with scientists to finalize critical studies in order to leverage their findings to garner larger institutional support. Our strategic approach helped groundbreaking gene therapy research go from the lab to clinical trial and, ultimately, FDA approval.