Meet the New Family Liaisons

February 2026

We are pleased to welcome several new Family Liaisons to the Foundation. Family Liaisons help to improve the Foundation’s outreach to both families and professionals at the national level. Liaisons volunteer to build relationships, network, collaborate and disseminate information. If you are interested in becoming a Family Liaison or if you would like to get in touch with your state’s Family Liaison, please email [email protected].

David X. Ruiz Cardona, Puerto Rico

David is an adult with CHARGE who lives independently in Puerto Rico. He discovered that he was a part of the CHARGE syndrome community in 2023 at the age of 38. He was diagnosed with hearing loss (he uses hearing aids), vision problems (he wears glasses), anosmia, and a cleft lip and palate; however, did not receive his full diagnosis until later in life.

David currently holds a Ph.D. in International and Interregional Business and works as a university professor of entrepreneurship at both undergraduate and graduate levels. In Puerto Rico, he has organized and collaborated on various events supporting entrepreneurs with disabilities. He has also conducted workshops and academic conferences in several Latin American countries, including Nicaragua, Peru, Colombia, Ecuador, and Brazil. Additionally, he has participated in international missions in Cusco and Lima (Peru), where he helped share the gospel of Christ with people with disabilities.

In 2025, at the biennial CHARGE Syndrome Conference held in Phoenix, he had the opportunity to share his life story and achievements as an individual living with CHARGE syndrome. David says, “This experience served as a testimony of how God has allowed me to achieve success and overcome life’s challenges.”

David currently collaborates with the CHARGE Syndrome Foundation to identify individuals in Puerto Rico. He says, “My greatest wish is to identify families and individuals with CHARGE Syndrome in Puerto Rico and connect them with the CHARGE Syndrome Foundation, as well as with other families and individuals affected in Latin America. In this way, they can receive the necessary support and take part in the biennial conferences.”

David has a passion for teaching in various international settings and enjoys traveling around the world and learning about other cultures.

Davis Crabb, Utah

Davis lives in Utah with his wife Anna, daughter Kenna, and son Elliot (with CHARGE syndrome).

For the Crabb family, the first few years after Elliot was born were the hardest. At the time, Utah did not have a Family Liaison, and Davis truly believes it would have made a meaningful difference to have someone that they could connect with—someone who understood what they were experiencing and could relate to their journey. He says, “I still remember the first time my wife and I met other parents of a child with CHARGE syndrome. Their son was older, and hearing about their experiences was incredibly insightful. It was the first time we truly felt seen and understood. While we are fortunate to have supportive friends and family, connecting with another family who has lived experience with CHARGE syndrome is different in a powerful way. I want to be a friendly, approachable face for families navigating those difficult early years, and to help point them toward resources—because you don’t know what you don’t know.”

Davis says “We’ve learned that we can do hard things—and yes, I know that sounds cliché. Going through everything with Elliot has been the greatest challenge of our lives so far, and it has also been infinitely rewarding. Our family has grown closer together. We love using ASL to communicate, and we love the connections we’ve made at deaf‑blind events in Utah and at CHARGE conferences.”

In his spare time, Davis likes to build LEGO sets, ski, mountain bike, listen to fantasy books (anything Brandon Sanderson, Red Rising, Lord of the Rings to list a few), read books his book club has chosen, and go out to lunch with friends and catch up. His family loves to watch movies, have random dance parties at home, play board/card/video games, travel, and enjoy all things Disney.

Sara Espanet, Massachusetts

Sara lives in Massachusetts with her husband David and daughters Avery and Riley. Her cousin Tim, age 30, has CHARGE syndrome. She has served as a Board Member for the CHARGE Syndrome Foundation since 2024. 

She says, “I volunteer to help other families who are just like me. When my cousin Tim was born, we had never heard of CHARGE syndrome. As a family, we all came together to learn as much as we could about CHARGE and how to support my cousin. I want to support other families on this same journey and maybe ease some of their worries.”

Sara and her family love spending time together—whether it’s a trip to the beach on Cape Cod, game night, watching hockey (Go Bruins!), or hanging out and watching a Disney movie. She says, “I have been fortunate enough to have the support of my husband and daughters the past two years when organizing the Walk and Roll for CHARGE at Perkins School for the Blind. My daughters have become very involved in the event and ‘love supporting what’s important to mommy’.”

Symone Griffin, New York

Symone is a 32-year-old adult with CHARGE syndrome who lives independently with her dog, Cupcake, in New York. Her big family includes her dad, bonus mom, two sisters, two bonus sisters, cousins, and a host of nieces and nephews. She says, “We are all very close and my mom definitely watches over us in spirit.”

Symone works as a school nurse at Sunshine Children’s Home and Rehab Center, a pediatric long-term care facility serving medically complex children, and holds a bachelor’s degree in Public Health from Monroe University.

She says, “CHARGE syndrome has always impacted—and will continue to impact—my health and daily functioning, requiring ongoing self-advocacy and support. As a child, I had a tracheostomy and a G-tube and experienced multiple surgeries and hospitalizations. I have a coloboma and am totally blind in my right eye, and I have vocal cord paralysis that resulted in a speech impairment. Despite this, I live a full, fun and active adult life and drive independently everywhere there is a road. These lived experiences have given me a deep understanding of the challenges individuals with CHARGE face across healthcare, education, and adulthood. My family has always believed in my ability to live a full and meaningful life; no matter what any prognosis said. I was taught to be proud of my culture and never to hide my disability. They supported me through medical and life challenges while also encouraging independence, confidence, and self-advocacy, which has shaped who I am today.

I volunteer with the CHARGE Syndrome Foundation because lived experience matters, especially within complex systems like those in New York. As an adult with CHARGE syndrome, I understand how isolating it can be when individuals and families are navigating healthcare, education, and state services—particularly during the transition into adulthood. It is a natural passion of mine to connect people with resources that help them better understand their options, elevate themselves from their individual situations, and move forward. Through this work, I aim to elevate adult voices and help ensure that the individuals and families with CHARGE are supported as whole people with full lives, goals, and futures.”

Symone enjoys watching documentaries and traveling whenever possible. She likes tapping into her “inner architect” by building LEGO sets and organizing her home, which helps her think and reset. She enjoys embracing femininity and creativity through fashion, makeup, skincare, and “unapologetically boosting the economy by shopping.” She loves spending time with her sisters, cousins, and two best friends, Briana and Madeline, as well as going to museums, festivals, concerts, restaurants, fairs, and pop‑up events. At home, you can usually find her relaxing with her dog Cupcake—her constant shadow and apple of her eye since 2014.

Click here to learn more about the Foundation’s Family Liaisons. To be connected with your state’s family Liaison, please email.