Cure GM1 Catalyst
It’s Rare Disease Month! That means Rare Disease Day is right around the corner (Saturday, Feb. 28). This is one of the most important times of the year to help raise awareness of GM1 gangliosidosis. Below you’ll find some simple and easy ways to get involved, from wearing Cure GM1 t-shirts to adding a Cure GM1 profile frame to your social media pages. Every tiny effort counts! We hope you’ll join us.
Also this month is the WORLD Symposium in San Diego, California. This is one of the largest conferences specifically focused on lysosomal diseases. Rest assured Cure GM1 will share all of the details about the GM1-specific developments presented at this year’s event. That includes Cure GM1’s own presentation titled “Global Characterization of GM1 Gangliosidosis: Insights from a Patient-Powered Registry.” The presentation is based on the Invitae / LabCorp registry, which is being shared and published to raise awareness for GM1 and our greater GM1 community. Thank you to everyone who contributed to that registry.
Community Engagement
Iris’s 18th Birthday!
We’re celebrating Iris’s birthday. Every birthday since 2014 has included a fundraiser in her honor to bring funding and awareness to GM1 gangliosidosis. This year is no exception and we invite you to contribute in her honor so that in the future, there will come a day when there are approved treatments for GM1. There must be meaning to the incredible suffering that Iris has endured. Iris’s legacy is contributing to a brighter future despite all the devastation and loss.
Donate to Iris’s birthday fundraiser!
And stay tuned for a special news piece airing in the Bay Area in her honor.
Nate’s GM1 Story
In this community highlight, we learn about Nate, who was diagnosed with late-infantile GM1. Nate’s mom shares the life-altering experience of receiving a GM1 diagnosis, the strength and courage that come from being a GM1 caregiver, and what she wishes more people knew about rare diseases.
Join the Cure GM1 Rare Disease Day Photo Contest
It’s that time again! Every year, in honor of Rare Disease Day (Feb. 28), the Cure GM1 Foundation hosts a photo contest to spread awareness about life with GM1. What types of photos are we looking for? Raw and poignant moments that humanize the disease and help others understand what it’s like to live with GM1 from day to day.
The winner will be featured on our Facebook and Instagram pages on Rare Disease Day! We’ll also highlight them in our March newsletter and send them a Cure GM1 t-shirt! The deadline to enter is Wednesday, Feb. 25!
Join the Cure GM1 Rare Disease Day Photo Contest
This year, Cure GM1 is focusing even more strongly on building community among GM1 families. One way we’d like to do this is by sharing birthday announcements on our social media pages.
If you’re a GM1 parent (bereaved parents included) and you feel comfortable sharing your child’s name, birthday and photos/videos with us, just email jess@curegm1.org with your child’s name, birth date and as many photos and/or videos you feel comfortable sharing.
A special note to bereaved families: If you prefer to share your child’s angel-versary, just let us know in your email.
Don’t Miss Our February Community Chat: Wednesday, Feb. 18, 1 p.m. PST
Don’t miss our monthly community chat Wednesday, Feb. 18. This families-only online chat is a safe space to ask questions and share your experiences of caring for someone with GM1.
Advocacy
Download Our Press Release Template for Rare Disease Day
One of the best ways to get involved in Rare Disease Day is to share your GM1 story with your local news media. We’ve created a template you can download here. Just fill in the blanks with your personal information and email it to the list of press contacts above. We recommend you paste the text directly within the body of your message. It will give the editor the information they need to determine if your story is a good fit for their publication or station.
Got questions? Need help filling in the press release template or creating your media list? Feel free to email jess@curegm1.org, and she’ll walk you through it!
Add Our Rare Disease Day Frame to Your Social Media Profile
Free and easy! Download our Rare Disease Day photo frame to your social media profile to raise awareness for GM1 and other rare diseases. This year, we “Rise Like the Phoenix to Cure GM1!” Create your frame here.
Having trouble adding the frame to your photo? Reach out to jess@curegm1.org, and she’ll handle it for you!
Caregiver Clinical Trial Navigation Process Course
The Child Neurology Foundation has created a Caregiver Clinical Trial Navigation Course to help families better understand how clinical trials work and how to evaluate them clearly. The course includes information on: how clinical trials work; the safety and ethics of patient rights; participation considerations (time commitment, etc.); and what happens when the trial ends. To check it out, click here.
Declare GM1 Day in your state or local community
GM1 Day is coming up on May 23. One of the most powerful ways to bring attention to GM1 is to proclaim GM1 Day in your state or city. The process is easy to complete (an online form in most cases). However, approval can take weeks to months, and each state has its own timeline. That’s why we recommend looking into the process sooner than later.
Please reach out to us at jess@curegm1.org if you would like help getting started with requesting a GM1 day proclamation in your city or state! We can provide each state’s online form and deadline.
Thank you so much to every family who has already secured a declaration in past years! These efforts go a long way in bringing awareness of GM1 to the greater community.
Free Virtual Summit on Gene and Cell Therapy
Joint the American Society of Gene and Cell Therapy for a free virtual summit designed for patients, caregivers, and advocates. Empowering Patients 2026: A Cell and Gene Therapies Summit will offer two half-days of accessible learning on the latest insights in cell and gene therapy. With practical takeaways, inspiring case studies, and direct access to experts, this virtual event empowers patient communities to be key partners in driving CGT progress. Click here to secure your spot!
research & biotech news
Give Kids a Chance Advances in U.S. Senate
Great news: The Give Kids a Chance bill, which had previously stalled in the Senate, has passed! Because the bill included some amendments, it will now travel back to the U.S. House of Representatives for approval. If approved there, it will head to the President for signing. Our children’s lives and the lives of all those suffering from rare diseases should not be bargaining chips as legislators champion their projects. We must be steadfast in our fight for the Rare Disease Priority Review voucher. Now is the time to contact your U.S. Representatives and let them know you support this bill.
Check out a full list of organizations supporting re-authorization (including the Cure GM1 Foundation) here.
Give Access to Genetic Counselor Services Act Re-Introduced to the U.S. Senate
The bipartisan bill, introduced by Senators John Barrasso (R-WY) and Peter Welch (D-VT) would amend Title XVIII of the Social Security Act to provide expanded coverage for services provided by genetic counselors under Part B of the medicare program. Click here to read a press release about the bill here.
Show your support for the bill by sharing the graphics and information available in this social media toolkit.
GM1 Featured in Global Leukodystrophy Initiative Clinical Trials Network Advocacy Newsletter
The Cure GM1 Foundation was grateful for the opportunity to share information on its efforts in increasing awareness of, and research for, GM1 in the most recent GLIA-CTN Advocacy Newsletter. GLIA-CTN focuses on research, diagnosis, and treatment for leukodystrophic conditions, which are rare genetic disorders associated with progressive neurological issues similar to GM1. Check out our full article here.
Fundraisers
Order Your GM1 Gear in Time for Rare Disease Day
Flaunt your passion for GM1 awareness by donning one of our 2026 Rare Disease Day t-shirts. This year’s theme, “Together We Rise,” brings the hope and resilience of the rising Phoenix into 2026 as the Cure GM1 team races toward the promise of Enzyme Replacement Therapy. Click here to order yours in time for Rare Disease Day.
Valentine’s Day at Minted.com
It’s not too late to stock up on Valentine’s Day cards while supporting the Cure GM1 Foundation. Click below and use the code FUNDRAISEGM1 for a 20% discount on your order!
Click here to visit Minted.com’s Valentine’s Day offering.
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