Cure CLCN6

07/24/2026

05/04/2026

Only 12 more days until our Walk for Rare Disease Research!

If you are in southern California, we'd love for you to join us at Murrieta Mesa High School between 10:30 am and 4:00 pm for a fun filled day where we raise awareness and funds for a CLCN6 gene therapy and broader rare disease research!

Event will include:

Food Vendors
Community Marketplace
Raffle Prizes
DJ
Carnival Games
Sensory Activities
Community Challenge - Walk a collective 5,000 laps!

For more information, email [email protected]
RSVP's are not required but can be made at
https://www.facebook.com/events/2416661122104200/

04/03/2026

Join us for a Walk For Rare Disease Research and our 5,000 lap community challenge!
Saturday, May 16, 2026 at Murrieta Mesa High School, Murrieta, CA.
10:30 am - 4:30 pm
Food Vendors
Market Place
Kids Zone
Music
We are raising money to fund a life saving CLCN6 gene therapy for Paxton, a Southern California child, and other kids with CLCN6 mutations, as well general rare disease research!
All Are Welcome and every donation gets us closer to saving Paxton and other children with CLCN6 mutations.

03/11/2026

WE’RE SEEKING VENDORS FOR OUR RARE DISEASE RESEARCH WALK!

Saturday, May 16, 2026
Murrieta Mesa High School, Murrieta, CA
10:30 am - 4:00 pm

Food Vendors
Merchant Vendors
Non-Profits

Message
Email: [email protected]
Call/Text: 909-280-5629

Sponsored by Cure CLCN6, proceeds will go towards developing a CLCN6 gene therapy and the California Center for Rare Diseases.

Take part in our community challenge to walk a collective 5,000 laps to raise awareness for all rare diseases!

03/09/2026

Winner of the 50/50 raffle at Paxton’s Pot of Hope: Fundraiser for Cure CLCN6!
Thank you to everyone who participated and for supporting Paxton and CLCN6 gene mutation research!

03/09/2026

We are beyond grateful to our family, friends and the Temecula, Murrieta and Menifee communities for coming out to support Paxton and Cure CLCN6! The love and support shown by everyone involved means the world to us!

A special thank you to Jessica and Joel with Grey Iron Brewing for organizing this fun, family friendly, and successful event. Words cannot express our gratitude for putting this fundraiser together for us.

We also want to thank Temecula School of Rock and Formby for their fantastic performances and for providing positive vibes and an electric environment!

Thank you to all of the vendors for their participation and support including Temecula Grilled Cheese, The Wonders of Sensory Play, JoJo’s Handmade Candles, Planet Jerky, Blossom Collections by Jen, V Face Painting, Charm and Happy Balloon Twister, Tanya’s Cookies, cosplaycali, hawkeye.cosplay and emnmcosplay.

Thank you to Heather with menifeexp for the promotional video and helping to share our story and mission with the community!

Thanks to the support of everyone involved with Paxton’s Pot of Hope: Fundraiser for Cure CLCN6, an incredible total of $3,523.50 was raised! Every single penny is going towards the development of a gene therapy for CLCN6 mutations.

We are excited to have everyone as part of our journey and we look forward to holding future events in our communities!

03/05/2026

FUNDRAISING UPDATE!!

We finished our most recent clothing drive through Saver's on Rare Disease Day, February 28th, 2026, and we received $814.25!

Very big thank you to our local communities in Murrieta, Temecula and Menifee for supporting Cure CLCN6 and Paxton!

Every penny raised is going towards a lifesaving gene therapy for CLCN6 mutations!

03/04/2026

Huge thank you to Menifee XP and Grey Iron Brewing Co., for this wonderful video and collaboration to support Paxton, Cure CLCN6, and children everywhere with CLCN6 mutations!

100% of the funds raised will go towards continuing to fund a gene therapy project at UMass Chan Medical School.

Please like, comment and share to show your support in our mission to develop a novel gene therapy for CLCN6 mutations for children everywhere!

03/02/2026

As we turn the page on Rare Disease Day 2026, our work at Cure CLCN6 and in the rare disease day continues. While we are anxious and fearful for the future, we are also holding on to hope and optimism for a better life for Paxton and the millions of people around the world affected by rare diseases. When we work together, we can make once seemingly impossible fantasies, a reality.

02/24/2026

Join us for a St. Patrick’s Day Benefit Concert in support of Cure CLCN6, a 501(c)(3) nonprofit founded by Paxton’s family to help fund life-saving gene therapy research.

Paxton lives with a rare neurodegenerative condition caused by a CLCN6 gene mutation. Cure CLCN6 is working with researchers at UMass Chan Medical School to develop a gene therapy, with hopes of beginning clinical trials in 2027 — but critical fundraising must happen first.

🍀 Paxton’s Pot of Hope
📅 Saturday, March 7 | ⏰ 3–10 PM
📍 Grey Iron Brewing Co.
🍕 Food Trucks
🎶 Live music
👨‍👩‍👧‍👦 Kids crafts • Face painting • Games
🚗 Classic car showcase
🛍️ Small community marketplace
👖 Lederhosen Best Dressed Contest
💵 $10 suggested donation at the door

Every dollar raised helps move us closer to a treatment — for Paxton and for every child affected by CLCN6 mutations.