Running for a Cure: Annabelle’s Amazing Graces Hosts 5K at No Label Brewing Co. in Katy to Fund GNAO1 Research and Spread Hope
For Shelley and Daniel van Deursen of Fulshear, hearing their daughter Annabelle’s diagnosis of the rare GNAO1 mutation was a moment that turned their world upside down. Their vibrant, joyful daughter, born on November 6, 2015, was thriving at first, but by six months old, they began noticing developmental delays. After months of doctors’ visits and unanswered questions, they finally received a diagnosis that would forever change their family.
"The day after we got Annabelle’s GNAO1 diagnosis was one of the hardest and lowest days of my life. I’ll never forget that day," Shelley shared. "The genetics counselor called to tell me they found the reason for Annabelle’s development delays—she had a mutation called GNAO1. I had no clue what that was."
What followed was devastating. Shelley learned that Annabelle was one of just a handful of children diagnosed with this mutation, and that her life expectancy was only about three to 18 years. Despite the grief, Shelley and her family have channeled their heartbreak into a mission to raise awareness and funds for GNAO1 research through their nonprofit organization, Annabelle's Amazing Graces, in the hopes of one day finding a cure.
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As part of their mission, on April 5, 2025, Annabelle’s Amazing Graces will host a special fundraising event at No Label Brewing Company in Katy. The event will begin with a 5K run and a 1-mile walk—an opportunity for families, friends, and community members to come together and support critical research for the GNAO1 mutation, with $125,000 raised at last year's race. "Join us and help us fight for Annabelle and all of her friends around the world with a GNAO1 mutation!" Shelley encouraged.
The event promises a fun and meaningful experience for all ages, with adult registrations priced at $40 and youth registrations at $25. Each participant will receive a t-shirt, race bib, and additional perks, including free beer tickets for adults and snow cones for kids. Entertainment and community spirit will be in full force as the Katy community comes together for this important cause.
“We’re fighting to change the future for Annabelle and other children like her,” Shelley said. “Honestly, it still is heartbreaking; there is still no cure or treatment options for the GNAO1 mutation, but we are trying to change that.”
The van Deursen family in December 2024, with Annabelle (far left), her parents and siblings. Despite the overwhelming challenges Annabelle faces, including hypotonia, dystonia, and uncontrolled movements, Shelley remains inspired by her daughter’s strength. “Annabelle is the hardest working little girl. She has made incredible progress and continues to fight every single day,” Shelley shared. “She can now crawl around the house, sit up on her own, and even walk in her walker. Her determination is unbelievable. We are so proud of her.”
Through Annabelle’s journey, Shelley has found a supportive community of families affected by GNAO1 through social media. “We’ve connected with families around the world. There are now about 350 children diagnosed with the GNAO1 mutation, and we are all working together to raise awareness and support research that could save lives,” she explained.
For Annabelle, attending third grade and continuing therapy are part of a challenging yet hopeful future. Shelley reflected on how their family’s perspective has shifted: “Annabelle is such a happy, beautiful, sweet, and funny little girl. She is truly one of the biggest blessings in our life, and we thank God every day for her.”
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The event at No Label Brewing Company is more than just a run—it’s a chance to honor Annabelle’s resilience and to help bring about change for other children with rare diseases. The funds raised from this event will go directly to GNAO1 research, with the hope of one day finding a cure.
Annabelle’s Amazing Graces invites you to join them on April 5, 2025, at 8:30 AM for this special day of fundraising, fitness, and family fun. For more information, to register, or to make a donation, visit Annabelle’s Amazing Graces Registration.
Tiffany Krenek has been on the My Neighborhood News team since August 2021. She is passionate about curating and sharing content that enriches the lives of our readers in a personal, meaningful way. A loving mother and wife, Tiffany and her family live in the West Houston/Cypress region.
