Reeling in Hope fundraiser raised over $21,000

You know that feeling of being close to someone since childhood, spending countless hours exploring the woods and fishing in the nearby pond? That's how cousins Ben and Charles Tinsley felt. They were inseparable growing up, and their friendship continued even as their lives took them in different directions.

Ben, Matilda (4), Ben Jr (8), Frances & Astrid (1)

Charles, Reece (5), Hugh (6 mo) & Maggie

When Ben's daughter Matilda was diagnosed with Rett Syndrome in the winter of 2020, it forever changed his family. Rett Syndrome is a rare genetic disorder that affects one in every 10,000 people worldwide. It primarily affects girls, and symptoms usually become noticeable between 6 and 18 months. In Matilda's case, she began to lose her ability to speak, walk, and use her hands to do things she had previously been able to do before her second birthday.

As Ben and his family navigated the challenges of caring for a child with Rett Syndrome, they found the Rocky Mountain Rett Association (RMRA) to be an invaluable resource. The organization provided everything from specialized doctors to resources and community; it was a lifeline for families like Ben's. One of the key players in the RMRA's efforts was Dr. Timothy Benke, a leading doctor in the field of Rett Syndrome. He provided critical care for Matilda and countless other children with Rett Syndrome, helping to improve their quality of life and offer hope for the future.

In April 2023, Ben and Charles teamed up to participate in this year's spring Risers 4 Rett fly fishing tournament. Ben and Charles decided to use their participation to raise money for RMRA and provide critical support and research for a cure for families affected by Rett Syndrome. Both of them used their social and business network to draw attention to this devastating disease and raised a whopping $21,251 for the cause.

You can also help raise awareness about Rett Syndrome and the vital work being done by organizations like the RMRA. Share this story with your network, and let them know how they can help. Whether participating in fundraising events like these or simply donating to organizations like the RMRA, we can all help make a difference in the lives of those affected by Rett Syndrome. We also encourage you to participate in future Risers 4 Rett events. Sign up to receive the Risers 4 Rett newsletter to hear when the registration opens for the next event > see link at the bottom of this page.