The Gwendolyn Strong Foundation is a nonprofit organization dedicated to increasing global awareness of Spinal Muscular Atrophy (SMA), accelerating research focused on ending the disease, and supporting families impacted by SMA and other life-altering conditions.

Victoria Strong formed the foundation with her husband, Bill, after their daughter was diagnosed with SMA at 6-months-old. SMA is a neuromuscular disease that weakens every muscle in the body, eventually hindering all ability to move. Gwendolyn was, in Victoria’s words, “a social butterfly, a dare-devil, an avid reader and an imaginative little girl. She loved nothing more than just being one of the kids. Gwendolyn lived a big and beautiful life, with many friends and filled with many adventures, until she passed at 7-years-old.”

Victoria and Bill went on to advocate for Congress to increase funding for research, helped pass legislation benefiting all rare diseases, and funded over 30 research programs that have now resulted in creating a treatment and a cure for SMA. They also help families with direct financial assistance for uncovered but necessary expenses of living with a disability, and advocate for inclusion.

The foundation preaches values that their daughter inspired, including “NEVER GIVE UP,” and “KINDESS MATTERS.” Victoria says, “Gwendolyn’s zest for life, social nature, and love of play inspired Gwendolyn’s Playground. Though Gwendolyn very much wanted to play alongside her peers in public spaces, all of the playgrounds in the region were inaccessible to her wheelchair and needs. Everyone in a community benefits from the elimination of social stigmas and prejudices, and this naturally happens when people of all abilities have the chance to play side by side. An inclusive playground will be a source of fun, learning, and belonging for everyone.”

Girl Scout Troop #50396 became involved with the project through their troop leader, Jenny Deakyne, who is longtime friends with Victoria and Bill. “[Victoria’s] daughter and my son TJ were good friends,” Jenny says. “Gwendolyn’s ‘never give up’ spirit and ‘kindness matters’ attitude is deeply instilled in our family. When Victoria announced the plans for the playground, I could not think of a better way to honor Gwendolyn and all she taught our community. We knew we wanted to somehow be a part of making it a reality.”

Jenny’s daughter, Margaret, immediately wanted to jump in on the project and help by donating a portion of the troop’s cookie sales. The girls then decided to take on a bigger role in the building of the playground as their Bronze Award project. Margaret says, “We are going to teach people in our community about being inclusive and why having a playground like this is important. We are going to spread awareness and do things to help raise money to get the playground built.”

The troop donated a total of $1,000 from their cookie sales towards the construction of Gwendolyn’s Playground.

 

Victoria says, “Kids helping kids is our favorite thing. There is nothing better than children learning that everyone can make a difference and that their hard work is helping to change the world.”

Both Victoria and Jenny were Girl Scouts growing up, and they still reflect on the lasting impact that the organization has made on their lives. “I started as a brownie in 1st grade and continued until the 5th grade,” Victoria says. “Two of my best friends from my Girl Scout days are still such important women in my life. Girl Scouts encouraged that can-do tenacity that made me bold enough to believe that there is always something do be done!”

Jenny was a Girl Scout when she was younger and always knew she wanted to be a leader for her own daughter someday. “I started our troop when she was in Kindergarten in 2014 with two of my close friends, Emily Bohnett and Kacie Stempel,” she says. “We now have 20 fourth grade girls from ten different schools.”

Jenny strives to instill values of compassion in her troop. “Girl Scouts to me means strong sisterhood,” she says. “Girls helping girls and their communities. Learning new life skills and giving back. Girl Scouts is an epic adventure that will build you up and teach you how to build up those around you.

“I am a firm believer in you get what you give. Be strong, never give up, and reach out to help those in need. A Girl Scout always leaves a place better than she found it. Most of my lessons revolve around some way we can make the world a better place, and these girls are always up for the task.”

Before every cookie season, the troop holds a “business meeting” to go over their sales motto of, “Do some good, have some fun, and save for the future!” While setting their goals for the season, the girls decide what they’d like to do for fun and match what they plan to spend on themselves with a donation to a local organization. In their five years of scouting, they have donated over $4,000 of their cookie earnings to local Santa Barbara nonprofits including Hearts Therapeutic Equestrian Center, The Santa Barbara Sea Center, and Direct Relief.

The importance of kindness is apparent among the girls of the troop. Chloe Bellamy, age 10, says, “It’s important that every kid can be included. Every human should be treated equally and with love and respect.” From cookie season she says she’s learned, “when you are raising money to put towards a good cause, it makes you feel good.”

Aliza Zacky, age 10, says that the troop decided on donating to Gwendolyn’s Playground as a group so that, “everyone can be included in the fun!”

Ines Mueller, age 10, encourages children to be kind to one another. “Don’t think about their differences. Think more about how they are really nice. Just think about them as a positive person and don’t worry if they look different.” She says her favorite part about being a Girl Scout is, “doing good for the world because right now we really need it.”

Troop #50396 has also signed on to volunteer at the Gwendolyn Strong Foundation’s booth at an upcoming Earth Day event to help the younger children paint “kindness rocks” for a Kindness Garden, which will be part of the new inclusive playground.

“KINDNESS MATTERS. Always. Sometimes a simple act of kindness can change a person’s life. A stranger lending a hand when you feel overwhelmed. A warm meal to get you through the day. A note of love. A donation. A kind smile. Gwendolyn seemed to bring out kindness in everyone who crossed her path. She was a natural ambassador that we are more alike than different and taught so many that friendship has no limitations. Gwendolyn’s Playground will offer the opportunity to experience the beautiful diversity of our world, teaching the life-long lessons of cooperation, empathy, and kindness. By giving everyone a chance to play together, inclusive spaces serve as a joyful microcosm of a more tolerant and kind society, in which children of all abilities can participate and enjoy equal opportunities to flourish.” – Victoria Strong

Have a story to share? Tell us how your troop used your cookie money or served their community by emailing us at media@girlscoutsccc.org.