Cure GM1 Catalyst
We did it!
In our June 2026 issue of the Cure GM1 Catalyst newsletter, we celebrate GM1 Day 2026. It was truly one of our greatest yet, and every bit of that magic came from you, our incredible community. Whether you shared a post, ran a race, held a fundraiser, or simply told one person about GM1, you helped make history this year.
Together, we celebrated:
- Eight states: California, Colorado, Georgia, Illinois, North Carolina, Texas, Virginia, and Wisconsin passed official International GM1 Awareness Day proclamations
- Three communities: Carlsbad, California; Rantoul, Illinois; and San Marcos, Texas declared GM1 Day right in their own backyards.
- Countless acts of heart from community members who ran races, raised funds, created beautiful posters, and flooded social media with awareness and love for GM1.
To every family member, friend, doctor, caregiver, journalist and news anchor who gave their time and energy to spread the word: thank you. GM1 may be rare, but we are not alone. Together, we are making a difference, and the momentum we’ve created is something to be genuinely proud of.
Here’s to you and to everything we can continue to accomplish together for those living with GM1.
With awe and gratitude,
Christine
Community
Joey, Oliver and Dominic’s Stories
“I am looking forward to the day when families who receive a diagnosis of GM1 don’t hear the words ‘there’s nothing we can do.’ My hope is for parents to receive the diagnosis early while their child is still high functioning, and then the doctor says to them ‘ok here are your treatment options.’” – Joey, Oliver & Dominic’s Mom
A special thank-you to Azafaros for organizing and sharing this interview with Cure GM1.
Read how GM1 affected these three brothers.
Join our Cure GM1 Community Chat Thursday, June 25, at 2:30 pM PDT / 5:30 pM EDT
Don’t miss the next Community Chat, a safe place to connect with other GM1 parents, ask questions and share your own experiences. For security and privacy purposes, registration is required.
Click here to register.
“Clara’s World” to be Featured at National Medical Center Art Display
“Clara’s World,” a piece of art created by community member Melinda Habingreither, has been selected for display in the first-ever Rare Artist gallery exhibition at Children’s National Medical Center in Washington, DC. Melinda’s piece will be on display from June 15 to Sept. 11, 2026. It features her granddaughter, Clara, who has GM1.
Iris Spreads Awareness in Times Square
Artist Zohra Amarta Shah’s portrait of Iris, Cure GM1 Founder Christine Waggoner’s daughter, was also recently featured on one of the “big screens” in Times Square as part of Rare in Times Square. The project was made possible by Beyond the Diagnosis as part of Rare Disease Day 2026.
Advocacy
It’s Time to Register for Rare Across America
The Everylife Foundation is currently organizing Congressional meetings as part of Rare Across America Aug. 10-21, 2026. This is your chance to meet with your members of Congress at their local, in-district offices and educate them on the issues that are most important to the rare disease community. Registration ends July 17.
NORD Webinar: Lawmaker Engagement for Rare Disease Advocates
On June 17, the National Organization for Rare Disorders will host a free webinar focused on building strong relationships with lawmakers and advancing rare disease policy.
When: June 17, 10-11am PDT/1-2pm EDT
NORD Releases Position Statement on Medicaid Work Requirement
Over the last two years, we have been closely following changes to Medicaid coming from H.R. 1, the “Big Beautiful Bill.” The first major policy change associated with Medicaid as part of the “Big Beautiful Bill,” the Community Engagement or Work Requirements for eligibility, is close to implementation. The National Organization for Rare Disorders has released a position statement in an effort to minimize its anticipated impact, which could dramatically impact caregivers. The framework addresses critical areas including exemptions, caregiver protections, administrative burdens, verification requirements, and patient engagement.
research & biotech news
GM1 Research Featured at ASGCT Annual Meeting
The American Society of Gene & Cell Therapy held its annual meeting May 11-15, and numerous studies focused on GM1 were featured at the event. Topics included:
- “Development of an AAV-Based Gene Therapy for GM1 Gangliosidosis Using a Anti-Human Transferrin Receptor Antibody-Fused Enzyme with Markedly Enhanced Therapeutic Efficacy”
- “Dual site administration of AAV gene therapy for treatment of feline GM1 gangliosidosis”
- “Development of an Hyperfunctional β-galactosidase for the Gene Therapy of GM1 Gangliosidosis”
- “Clinical comparison of gene therapy-treated and untreated infantile GM1gangliosidosis in siblings”
- Testing a Dual AAV Gene Therapy Vector to Treat Galactosialidosis and sialidosis Using Both Small and Large Animal Models”
Fundraisers
Do It for GM1 Starts Aug. 1!
Do It For GM1 is a super fun and easy way to raise awareness and financial support for GM1. While participants can choose ANY activity they’re passionate about, physical activities like walking, running, and biking are some of the most popular and healthy ways to get involved. The Do It for GM1 movement runs through the month of August this year! Let’s get moving!
And Then Treat Yourself to Some Chocolate!
Don’t forget: One of the easiest ways to support Cure GM1 is to satisfy your chocolate cravings.
Get Involved
Register Now for the 2026 Virtual International Cure GM1 Community Conference!
Registration is FREE for families impacted by GM1. This year’s virtual event is a wonderful opportunity to hear the latest updates in GM1 research and caregiver support. Sponsorship opportunities are available!
When: October 2, 2026
Where: Online
Click here to register and learn more.
And Stay in the Loop Regarding All of Our Events This Year
Ways to Give – Your Support Matters
RaiseRight | Walmart Spark Good | Facebook Fundraisers | Donate |
Set up a Recurring Donation
Visit our Take Action page for more ways to support our community.
Cure GM1 Foundation | PO Box 6890 | Albany, CA 94706 US