Today we’d like to introduce you to Victoria Strong.
So, before we jump into specific questions, why don’t you give us some details about you and your story.
I grew up in Los Angeles roaming Topanga Canyon, cruising Ventura Blvd, and exploring thrift stores in Venice Beach and on Melrose. My husband and I met at TGIFridays in the Valley (you can meet your significant other anywhere) and after doing the commuter life for several years we decided to pause our careers, sell everything, and travel the world for a year. On that journey, we learned that plans can often go arwy but there is still joy within the new direction. We returned to the US, more certain of what we wanted out of life, and moved to Santa Barbara to start our family.
Our first child was born on October 4, 2007. Gwendolyn. She was perfect in every way. I lost my mom to cancer when I was 21 and so holding Gwendolyn for the first time, I felt a renewed connection to that long-missed mother-daughter bond. Gwendolyn laughed easily, smiled big gummy smiles and became the light of my life. At 3-months-old, she wasn’t reaching for toys and we were suddenly thrown into the medical world, uncertain of her fate, but optimistic. We spent her first Christmas and New Year in the hospital with progress and decline and a lot of confusion. Then, at 6-months-old, Gwendolyn was officially diagnosed with spinal muscular atrophy (SMA), a degenerative neuromuscular disease, and given months to live. “No treatment, no cure, nothing you can do. Take your baby home and love her for what limited time you have left.” Though devastated and grieving, “nothing” lit a spark in us and we launched headfirst into advocacy. I have always believed in the power of personal action and the idea of doing nothing was completely counter to my core. From her hospital bed, we called every doctor, researcher, nonprofit, and advocacy group with any connection to her disease. And over the next ten years we would go on to create research programs to bring new talent to the field, fund research around the world, help pass federal legislation impacting clinical trial access, lobby for healthcare reform and the removal of lifetime caps directly ostracizing innocent children from our health system, offer support and financial help to families with necessary but uncovered expenses of life with SMA and other life-altering conditions, and, perhaps, most significantly we funded and helped get a groundbreaking gene replacement therapy to FDA-approval. Now, babies born just like my Gwendolyn are walking into bright futures!
The neurologist was right in many ways. Gwendolyn did indeed become profoundly disabled using a machine to help her breathe, help her eat, help her cough, and a wheelchair to move through the world, but she was also the most social child I have ever known and demanded to be fully part of the world. She danced hip hop, ran half marathons, loved fashion and reading, and most of all she loved being one of the kids having fun. Gwendolyn lived a life full of adventures and friendship and belonging. People all over the world were moved by her tenacity and bright spirit and she is the heart of everything we do. Gwendolyn died at 7-years-old and we once again found ourselves having to navigate a new path. It is in recognition of her ability to bring people together and bring out the best in each of us that we now are building the first inclusive playground in Santa Barbara County. We believe every child deserves to play and are reimagining play to be more for everyone. Gwendolyn’s Playground will be a highlight of the Central Coast.
Great, so let’s dig a little deeper into the story – has it been an easy path overall and if not, what were the challenges you’ve had to overcome?
Definitely no. I had to keep my child alive every day, knowing one day I would not be able to. But I also believe in using our pain to fuel change. I could not change what was but I could do something to create a different outcome for others.
Please tell us about Gwendolyn Strong Foundation + Never Give Up.
We started the Gwendolyn Strong Foundation to do what wasn’t being done. We collaborated with smart partnerships when it made sense and pooled ideas and resources whenever possible. This allowed us to operate in such a way that 100% of all money raised went toward the cause. Our passion and dedicated rallied people across the world to get involved and NEVER GIVE UP. Our apparel brand came out of frustration that there was nothing available that we would actually wear. We wanted high-end tees with graphic messages that made a difference. Not only have we raised nearly $1Million with our sales, wearing NEVER GIVE UP. has become a universal mantra of courage and support for people all over the world. We all have a reason to dig deep and hang on.
Is there a characteristic or quality that you feel is essential to success?
Grit, determination, passion.
Pricing:
- Hat: $34
- Tees: $28
- Sweatshirts: $54
Contact Info:
- Website: www.nevergiveup.org
- Email: [email protected]
- Instagram: nevergiveuporg
- Facebook: /endsma
- Twitter: nevergiveuporg
Image Credit:
Kacie Jean Photography, Jennifer Yau Photography, Bear & Pineapple Photography
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