Gwendolyn Strong Foundation (GSF) is one of our three fundraising partners for She.is.beautiful Santa Barbara. Over 100 ladies have signed up to bring more awareness to this cause. Learn more about Spinal Muscular Atrophy (the #1 genetic killer of young children) and GSF here as well as from Gwendolyn’s mom shares her story below:
Name: Victoria Strong
Occupation: Mother/Nonprofit founder
How did The Gwendolyn Strong Foundation come about? The Gwendolyn Strong Foundation (theGSF) was born out of our firsthand experience after our daughter, Gwendolyn, was diagnosed with Spinal Muscular Atrophy or SMA at just 6-months-old. We had no family history, had a perfectly “healthy” pregnancy, and had never heard of SMA, but soon learned SMA is the leading genetic killer of young children. Gwendolyn was given mere months to live, would lose all physical abilities, and doctor’s said there was nothing we could do. We formed theGSF as our something we CAN do. In just a matter of years, theGSF has funded over 20 research programs, several of which are now making their way through the clinical trial process as viable treatments, granted over 250+ iPads to open the world to those with limited movement, built an iPad communication app downloaded by 100,000 people with non-verbal communication struggles, worked to get SMA/rare disease legislation passed to increase NIH funding, and have helped families around the world facing the impossible. We also created the nonprofit NEVER GIVE UP. apparel brand to motivate, support, and give courage.
What did Gwendolyn teach you? To NEVER GIVE UP. Gwendolyn was severely disabled. She couldn’t walk or stand or move her arms or breathe without a machine or tell me she loved me in the traditional way. But she was fiercely independent and determined to live a life of adventure alongside her able-bodied peers. She was proud of who she was and approached each day with enthusiasm. Gwendolyn passed away last summer at the age of 7 and she didn’t just live longer than expected, she lived a big and beautiful life. She defined NEVER GIVE UP.
What did Gwendolyn love most about running? Gwendolyn said running made her feel free. She was also a daredevil and loved going fast.
When did running first become a regular part of your life? My husband decided to start running to become healthier. He soon turned that into training for a marathon. Gwendolyn and I cheered for him during his training races and soon she decided she wanted to be out there running, too. I’m not a runner. I was the girl who made every excuse in the book during “Mile Day” in high school. But when my daughter wanted something, I did anything to make it happen. So… I started running. It is because of Gwendolyn that I ran She.Is.Beautiful. In fact, this race was the first time in my life that I ran as far as a 10K. And, I got to run the last mile pushing Gwendolyn. I’ve never felt so strong. We soon completely the SB Half Marathon together and holding her hand while we ran was the best thing in the world. It made me feel invincible.
What was/is the biggest challenge in working out consistently? Gwendolyn required around-the-clock care and the frequent medical emergencies that became part of our life were very stressful, so I was tired. Bone tired, all the time. Getting out there to run was always hard, but once I did I always felt a renewed energy. It was also a good source of therapy to sweat, cry, and sometimes even scream as I ran.
What are you future goals in both running and life? I’m currently expecting our third child, and I’m not running much these days. But my goal is to always live a healthy and active life. It is such a gift to be able to move one’s body in any capacity!
What do you like to do when you are not running? Juggling our nonprofit and advocacy work with motherhood keeps me pretty busy. As for fitness, I love hiking through beautiful Santa Barbara, walking along the coast, and doing yoga.
How did you first hear about the she.is.beautiful race series and why do you keep coming back each year? The Gwendolyn Strong Foundation and our nonprofit NEVER GIVE UP. apparel brand share the same positive and empowering values as She.Is.Beautiful.
What’s one word you would use to describe how running makes you feel? STRONG.
What keeps you going? Gwendolyn. She will always be my reason to NEVER GIVE UP.
What does healthy look like to you? Being authentic, being kind, doing your best, and living a life that makes the world a better place.
Along your own life journey, what’s one truth you have uncovered? There is always something to be grateful for. And in the bleakest of times, that gratitude is a lifeline.