The idea to fundraise for CMTA didn’t start with a plan. It started with a shared moment.
A quiet moment on the stairs became the catalyst for one family to share their story and inspire hope across the CMT community.
Halfway up the stairs at home, Violet had to stop. Exhausted and struggling more than usual, she quietly asked her father to carry her the rest of the way. “That moment stayed with me.” her father said, “It was quiet, it was simple, and it broke my heart.”
For Grant and Vanessa Stanis, parents to 10-year-old Violet, moments like this are unforgettable. They linger long after the day ends, shaping how they support their daughter as she grows and navigates the world.
A search for answers leads to a CMT diagnosis
Violet lives with Charcot-Marie-Tooth disease (CMT). Like many families in the CMT community, the Stanis family’s journey didn’t begin with clear answers, but with instinct. Vanessa noticed early on that something about Violet was unique. She missed early milestones like crawling and walking, and by 18 months, those concerns led Grant and Vanessa to seek out specialists.
Violet began occupational and physical therapy early, but as years passed, answers were still out of reach. When she was five, her pediatrician recommended seeing a neurologist from Texas Children’s Hospital and ordered a full genetic panel. The results finally brought clarity: a mutation in the DYNC1H1 gene, associated with CMT20.
“Having a diagnosis was both grounding and overwhelming,” Grant and Vanessa shared. “It answered so many questions about why Violet moves differently, while also opening the door to many new ones.”
Connection brings clarity
As they processed their daughter’s diagnosis, the Stanis family leaned into the CMTA community. They connected with other families, participated in the Austin Walk 4 CMT, supported CMTA through their giving, and made it a priority to attend research meetings, like the CMTA Patient & Research Summit, to stay informed about the latest progress in CMT research.
What began as a search for answers became a source of empowerment. This became especially important when it came to talking with Violet about her diagnosis.
“We waited until Violet was in second grade to fully explain her diagnosis to her,” they shared. “We were nervous, but we tied that conversation to a CMTA walk here in Austin, which helped her understand her condition in a positive and empowering way.”
While CMT is part of Violet’s life, it doesn’t define her.
“Violet is pure personality,” said Grant and Vanessa. “Full of energy, a little sass, and endless whimsical jokes.”
She loves to sing and dance, is fully obsessed with K-pop Demon Hunters, and finds joy in animals, from her favorite horse at equine therapy, Rosemary, to her golden retriever, Poppy. Right now, Violet is on a mission to double her Girl Scout cookie sales, an ambitious goal she approaches with the same determination and confidence she brings to everything she does.
Giving Tuesday gives voice to Violet’s story
As Violet got older, Grant began carrying moments like the one on the stairs differently. Over time, keeping them private no longer felt like enough.
Around the same time, Grant was using LinkedIn more intentionally to tell authentic stories at work. As Giving Tuesday approached, the quiet moment on the stairs made his decision clear.
“I shot out of bed and raced to my computer,” he said. “As I started writing, the emotions poured out. The tears came, and the words followed.”
What began as a moment of heartbreak quickly turned into advocacy and impact. Grant shared Violet’s story on LinkedIn, and people responded almost immediately.
“Friends from college, colleagues, vendors, and even people from Europe started donating and sharing the post,” Grant said. By the end of the day, more than 6,000 people had seen Violet’s story, 47 donors had contributed, and the family raised over $11,000 for CMTA.
For Grant and Vanessa, fundraising for CMTA wasn’t about hitting a specific monetary goal. It was about sharing the reality of Violet’s CMT experience and discovering how powerful authenticity can be.
“What made the day even more special weren’t just the dollars,” they shared. “It was the supportive comments. People genuinely wanted to hear Violet’s story and were cheering her on from afar. It was the community and encouragement that truly touched us.”
Start where you are. It’s the doing that matters.
Grant and Vanessa offer a simple message to other families considering fundraising or getting involved with CMTA.
“Whether you raise $10 or $10,000, every dollar counts,” they said. “But what matters most is sharing your story. Your struggles are real, and you don’t have to face them alone.”
Every fundraiser created, and every story shared, helps move CMT research forward and builds a future where kids like Violet are surrounded by hope and possibilities.
You don’t need a perfect plan or a large platform, just a story and the courage to share it.
Inspired by the Stanis family? Start your own fundraiser for CMTA and help create lasting change for the CMT community. Visit www.justgiving.com/campaign/CMTA
