Murrieta Family Hosting a Community Festival: Walk For Rare Disease Research

On Saturday, May 16th, 2026 from 10:30 am - 4:00 pm, Cure CLCN6 is hosting a Walk for Rare Disease Research community festival, at Murrieta Mesa High School (24801 Monroe Ave, Murrieta, CA 92562).

The festival will feature a variety of vendors including food and refreshment vendors, a community marketplace, a DJ, a kids zone with games and sensory activities, and raffle prizes. Cure CLCN6 is also issuing a community challenge to walk a collective 5,000 laps in honor of rare disease research.

Founded and run by the Purdy family of Murrieta, Cure CLCN6 is a 501(c)(3) patient advocacy group for children with mutations on the CLCN6 gene. The Purdy's formed Cure CLCN6 in 2024, when their now nine year old son Paxton, was diagnosed with an ultra-rare neurodegenerative mutation on the CLCN6 gene.

Cure CLCN6 is working with UMass Chan Medical School to develop a novel gene therapy to treat mutations on the CLCN6 gene. The gene therapy will silence the toxic protein the mutation is producing and provide a healthy copy of the gene to Paxton and other children with CLCN6 mutations.

A suggested minimum donation of $10 is requested as 100% of the proceeds will go towards a life saving gene therapy for Paxton, and a small percentage will also be donated to the California Center for Rare Diseases to support broader rare disease research.

Cure CLCN6 is currently fundraising in anticipation of the clinical trial estimated to start in 2027, after the completion of the safety and efficacy studies expected to begin in summer 2026.

For more information on Cure CLCN6 and the Walk for Rare Disease Research, visit https://cureclcn6.org, or email contactus@cureclcn6.org.