Nadia Menjivar, 24, of Mission Hills, walked the runway alongside her mother in a recent fashion show – it was a unique experience. While typical fashion shows are “exclusive,” this one was “inclusive.”
The event, a fundraiser to benefit the Pacoima-based nonprofit Smiling Hearts: Williams Syndrome (Smiling Hearts WS) – which supports families of children with Williams Syndrome and other disabilities – included women, from their late teens to their 40s, who have special needs.
“I felt honored to be able to do the fashion show,” said Menjivar, who has a rare genetic condition called Kabuki Syndrome, following the show. “It was a very good experience.”
Gisela Menjivar, who graced the runway with her daughter, described the event as “wonderful.” Too often, she told the San Fernando Valley Sun/el Sol, individuals with special needs, like her daughter, don’t get to participate in fun and exciting opportunities like these.
“The fact that we are promoting inclusiveness by having them experience things like this is life-changing,” added Gisela Menjivar.
That was precisely what Rhonda Garcia-Piñon and her husband, Frank Piñon, were hoping to accomplish – to plan a fundraising event that would allow those with special needs to be “seen and included.” At the same time, guests could support and learn more about their nonprofit, Smiling Hearts WS.
Their motivation to start the nonprofit is to support those like their son Jacob, now 16, born with Williams Syndrome, a rare genetic disorder that occurs in one out of every 7,500 to 10,000 births. Those with Williams Syndrome can have distinctive facial features, intellectual and cognitive disabilities and cardiovascular disease. They can also be extremely sociable and gregarious.
“Being a parent of a child with special needs, sometimes you feel misunderstood,” said Garcia-Piñon. “You want to be able to share with your friends what’s going on with your child, but you know it’s not easy for them, which is understandable because … they’re not in your shoes.”
When Jacob was younger, Piñon found a supportive community in a weekly parent group.
“I did a three-year early intervention program with my son and we used to have counseling sessions every Friday, and on those Fridays we would do a round table talk with other parents, and for me that was very important,” said Piñon, who was able to participate because he was on leave due to a workplace injury. Unfortunately, his wife missed out because she was working.
“I felt the loneliness of not really having friends or even family members who could truly understand what my husband and I were going through,” recounted Garcia-Piñon.
Creating Community
After many discussions over the years that followed, in late 2024, Garcia-Piñon launched Smiling Hearts WS, which initially focused on helping families living with Williams Syndrome connect with one another, share their experiences and create a sense of community.
“When you get a diagnosis like this, you want to learn more about it and you want to be around other families who have the same diagnosis,” said Garcia-Piñon.
At the center of the nonprofit are its social activities – monthly coffee meet-ups for mothers, gatherings specifically for fathers and regular group events for parents and their children. They also host educational events and provide information about available resources.
They chose to open up the nonprofit’s events and resources to families of children with other special needs and disabilities following a mom’s event they hosted last year, when they heard from multiple community members asking if they could participate.
While Williams Syndrome remains at the root of Smiling Hearts WS, Garcia-Piñon said she realized that including the broader special needs community could be beneficial for everyone because there are many overlapping feelings and experiences they share in common.
After experiencing so many difficulties of her own over many years, Garcia-Piñon decided that Smiling Hearts WS would aim to help “all other families going through similar situations.”
Fashion Show Fundraiser
The fashion show fundraiser was the nonprofit’s biggest event to date. The models walked the runway wearing a variety of dresses from Chula Chic, a shop located in the City of San Fernando owned by Angelica Bañuelos, who sells imported goods from Mexico.
Jacob watched the fashion show with an effervescent smile on his face the entire time, greeting every model with a wave and joyfully applauding along with several dozen other guests.
“There should be more organizations like [Smiling Hearts WS], because the population of kids and adults with disabilities is large – it’s much larger than people actually know,” said Gisela Menjivar.
All proceeds from the June 18 fundraising event, which was held at Buildability in Sylmar, will directly benefit Smiling Hearts WS to help the nonprofit continue organizing community activities and educational events for special needs families across the San Fernando Valley.
“At a recent men’s social, we were able to come together and just ping pong information. One of the things [I shared] that I struggle with is my son, who’s 16 now, asking me, ‘Dad, when am I getting my [driver’s] license?’” he said. “How do you tell your son [that he can’t] and how do you share that with someone who has typical children?
“Through these support groups,” added Piñon, “we can come and share our struggles, and also [happy] milestones.”
Garcia-Piñon said she hopes the fashion show made all the models feel beautiful, included and empowered, adding that inclusiveness and empowerment are two goals of Smiling Hearts WS.
“We want individuals with special needs and disabilities [and their families] to always feel included,” she said. “It’s about building community.”
To learn more about Smiling Hearts: Williams Syndrome, go to: www.smilingheartsws.org.