Cure GM1 Catalyst | September 2026
COMMUNITY
ADVOCACY CORNER
GET INVOLVED
SHOP FOR GOOD
Fall is already here and this month, is your chance to participate in our Do It For GM1 campaign. And we have only one month to go before our virtual community conference! We just published the full agenda and the speaker bios. Check it out and register now.
This time of year can also be very difficult for families impacted by GM1. The start of the school year is a reminder of milestones and for families who have lost loved ones, itโs a reminder that their child is not starting a new school year. Social media is filled with pictures of first day of school photos, while some children with GM1 never reached school age or children are too sick to attend, or caregivers are bracing for meetings with school teams.
These reminders of how GM1 changes our lives can be painful. Every single day, we are working for change and for a brighter future.
Furthermore, Iโm celebrating (ahem) a big birthday. You can guess one of my biggest wishes. As always, my wish is to help our community. Please kindly consider a birthday donation in my daughter Irisโs honor and in honor the entire global GM1 community as we continue to push forward on many fronts.
Sincerely,
Community
Raviโs Story
โI wish people understood that rare diseases do exist, and that never having had a rare disease in the family does not mean it cannot happen. Genetic testing is important. Genetic changes are not only about us. They are also about what may come from us and the mark that is left on those who remain to tell their story.โ
-Raviโs Mom
Thank you Jess!
Cure GM1 says goodbye and thank you to Jess Madison, who supported Cure GM1 with communications and development projects since this past November. Jess is sending warm wishes to everyone in the Cure GM1 community as she heads to a new position in her local community.
Welcome Ashley!
We are pleased to welcome Ashley Harvey who has joined the team in a communications and outreach capacity. Ashley brings 15 years of communications and marketing experience, having spent much of her career partnering with entrepreneurs and nonprofits in a consulting capacity. She is honored to join the Cure GM1 team and contribute to a mission so deeply dedicated to supporting and advocating for GM1 families.
A Special Thank You from Sprout Health Solutions Participants
The Sprout and Cure GM1 teams want to thank all caregivers who participated in the Sprout Health Solutions interviews and focus groups to study outcomes in GM1 Type 2. The information you shared is now being analyzed and will be used to refine disease models that reflect the real experiences of individuals with GM1 and their caregivers. A publication is planned on this work and the results will be shared.
New Anti-GM1 Antibody v. GM1 Guide Published
Cure GM1 is contacted by many individuals around the world who are in need of guidance and information. An ongoing area of confusion for some adults are those with Anti-GM1 antibodies who mistake their condition for GM1 gangliosidosis. Although both conditions involve GM1, the two conditions are completely distinct. Learn more here.
Cure GM1 Community Chat: Thursday, Sept. 17, 3 p.m. PDT / 6 p.m. EDT
Please join us! This monthly gathering is a casual opportunity to connect for guidance and getting to know each other. You don’t have to move through this experience alone. We’re here for you!
New to the community? You can share as much or as little as you feel comfortable with and join calls as often you like.
Special Needs Planning Conference
Mark your calendar for September 25 at 9:00 AM PST / 12:00 PM EST Better understand the tools and strategies that can protect their loved oneโs future.
Topics Include: Special Needs Wealth Management, ABLE Accounts, Social Security, Special Needs Trusts & Estate Planning
Advocacy Corner
Announcing Our Conference Keynote Speakers and Full Agenda!
We’re just one month out from our GM1 Community Conference! We canโt wait to see you on October 2nd. We are extremely proud of the quality and variety of our speakers and topics.
The full agenda and speaker bios are available now!
Lesa Brackbillโs talk features her book: A Brighter Blueprint: The Twelve Threads of Effective Advocacy. She shares a balanced approach to patient advocacy.
Amber Freed featured by People magazine is a rare disease mom who was successful in repurposing a drug and driving a gene therapy forward for her son.
The conference is FREE of charge for GM1 families. Registering takes just a moment but helps us tremendously.
Exciting News for Newborn Screening in the US
After a recent hiatus, we are pleased to share that the Health Resources and Services Administration (HRSAgov), HHS announced a new pathway to condition addition for the federal Recommended Uniform Screening Panel (RUSP) has been re-established.
Get Involved
Do It for GM1 and Help Fund ERT
Our community teams are actively raising funds to advance life changing Enzyme Replacement Therapy (ERT) research, but they can’t do it alone. Join us in putting hope in motion. Whether you start your own campaign, back an existing fundraiser, or make a direct donation, no effort is too small to make a difference!
Make a Plan to Support Year-End Giving
- Giving Tuesday, December 1st
- Purchase gift cards to benefit Cure GM1
- Year-end matching campaign
Shop For Good
New Halloween design in our charity shop.
Fall bulbs are now available through Oct. 15.
Treat yourself or a friend year-round and benefit Cure GM1.
Ways to Give โ Your Support Matters
RaiseRight | Walmart Spark Good | Facebook Fundraisers | Donate
Your gift is tax-deductible to the fullest extent allowed by law. We are a 501(c)(3) organization with minimal overheadโmaximum impact goes directly to research. Tax ID: 47-3154419
Visit our Take Action page for more ways to support our community.