Saturday, June 24, 2023 at Mylan Park, Morgantown, WV.

MORGANTOWN, WEST VIRGINIA, Saturday, June 24, 2023– For the second year in a row, Mylan Park will be partnering with the Johnson family and the A-T Children’s Project to host a 5K fundraiser in honor of Rhett Johnson. The event will benefit the A-T Children’s Project (A-TCP), an organization dedicated to finding life-improving therapies and a cure for ataxia-telangiectasia (A-T), a rare, fatal genetic disease that affects children. Rhett has been diagnosed with A-T and the Johnson family hosts Rhett’s Stomp Out A-T 5K to raise money for his rare disease.

Rhett’s A-T journey started when he was around the age of two. Up until that point he had been growing normally and meeting his developmental milestones. Soon after, Rhett’s parents, Megan and Zach, then started noticing that he was more “wobbly” and “slobbery” than the other kids his age. Two years later with a DNA test, Rhett was diagnosed with A-T. Their biggest fears had come true that they are dealing with something that has no cure, no treatment, and is progressive.

After receiving this heartbreaking diagnosis, the Johnson family became connected with the A-T Children’s Project. Community is everything and the A-TCP has set them up with others in the United States and around the world that share their same story. Because the A-TCP is working vigorously with researchers around the globe to find a cure, the Johnson family felt hope.

Due to the fundraising efforts of the Johnson family and families like them all over the US, research has been ongoing. The A-TCP’s research has led to the development of treatments for A-T symptoms, including feeding tubes and immune therapy, as well as gaining a deeper biological understanding of how a mutated A-T gene causes many severe problems. The A-TCP is planning more clinical trials to find therapies to treat A-T and slow its relentless progression.

Last year, with family, friends and local support, Rhett’s Stomp Out A-T 5K raised over $38,592! The Johnson family hopes to exceed this amount this year and reach their goal of raising $40,000. The event will begin at 8:00 AM at Mylan Park.

There will be vendors, fun kids’ activities, superhero characters, a silent auction and more. The Johnson family hopes to see you there and thanks you for your support!

For more information or to donate, please contact Megan Johnson at megan.pritt.wv@gmail.com or visit atcp.org/rhetts5k.

About the A-T Children’s Project

The nonprofit A-T Children's Project partners with academic and industry investigators worldwide - organizing and supporting innovative research, conferences, clinical teams, data platforms and biomarkers - to optimize disease management strategies, develop new treatments and find a cure. To learn more about the A-T Children’s Project, visit www.atcp.org.

About ataxia-telangiectasia (A-T)

A-T is a progressive, degenerative disease that affects a startling variety of body systems. Children with A-T appear normal at birth, but the early signs of the disease usually appear during the second year of life. A-T causes the relentless loss of muscle control, usually making children dependent on wheelchairs by age 10 and making it difficult for them to read, speak and eat. Children with A-T also have a strikingly high risk of cancer. Although considered a rare “orphan” disease, A-T may actually be much more common than we know, since many children with A-T, particularly those who die at a young age, are never properly diagnosed. There currently is no cure for A-T and no way to slow the progression of the disease. Research on A-T may help many more common diseases, such as cancer, Alzheimer’s disease and Parkinson’s disease. To learn more about A-T, visit www.atcp.org.