Take Action

Ways You Can Help Cure GM1

1. Donate

The single most effective way you can help Cure GM1 is to donate money. Nearly all the money we raise goes into research for treatments and a cure for GM1 gangliosidosis. Most everything else you can do would facilitate spreading awareness to generate donations. At the end of the day, money is what drives research–and what limits it.

If you want to donate in a way that doesn’t involve direct payments, you can. We accept donations of stock and used vehicles, which don’t have to be running. Please also take advantage of your corporate matching program, if your employer has one.

Family with two young children, one on horseback outdoors, representing a GM1 family taking action

2. Fundraise for Cure GM1

Two girls wearing All Out fundraiser tank tops smiling and flexing at a GM1 fundraising event

When members of our community host fundraisers, you expand our audience to your network. This is very powerful for a few reasons. First, it spreads information about our organization to people who wouldn’t otherwise see it. Second, the people you know trust you much more than they trust us, an unknown organization. They are much more likely to donate when you ask than when we do. And as you know, donations are critical.

Remember, there is no shame or harm in promoting our cause. We are trying to save the lives of those who suffer from GM1.

There are many opportunities and methods to fundraise throughout the year. Take a look at our Fundraise for GM1 Page and our Fundraising Manual for more information.

3. Engage on Social Media

Social media is a critical tool we can use to bring awareness to GM1 and our organization. We are seeking help with tasks such as sharing the stories of those newly diagnosed, responding to community posts, creating new content, and supporting fundraising campaigns.

4. Advocate for Better Legislation

Often times laws are proposed that would positively or negatively affect the quality of life for GM1 patients, as well as the ease of access to essential medications, therapies, and equipment they rely on. Contacting your lawmakers can affect these outcomes.

Good advocacy resources include:

Action Is Hope sign with pink balloon at a CureGM1.org advocacy event

5. Join a Clinical Trial

Father and child with GM1 enjoying time together outdoors at a park bench

Clinical trials are research studies which evaluate the safety and efficacy of a new medical intervention in people. In the case of GM1 gangliosidosis, there are currently trials in progress, but they are primarily focused on Type 2 GM1. 

You can also help support research by supporting studies that will help deepen the understanding of GM1 such as participating in interviews, focus groups, and pilot studies. In these activities, there is no treatment.

The more people that participate in these trials and natural history studies, the faster that treatments may become available for GM1 patients. By participating in a clinical trial, you help everyone suffering from GM1. Contact us to ask us about the overall trial landscape or check out our GM1 Clinical Trials Guide.

6. Share Your Data with the GM1 Matrix

Family in holiday sweaters embracing two young children with GM1 in a warm portrait

The GM1 Matrix patient portal enables registration in a study run by Cure GM1 Foundation and COMBINEDBrain that collects natural history and real-world data from families affected by GM1 gangliosidosis worldwide. A natural history study follows people with a disease over time with no intervention, documenting symptoms, care, and quality of life. For a rare disease like GM1 gangliosidosis, that record is critical to drug development, because it shows researchers how the disease progresses and gives them a comparator for measuring new treatments.

The Matrix collects subtypes, diagnostic journeys, symptoms and abilities, genetic information, quality of life, and medical records. All published data is anonymized and used solely to advance research, under the oversight of the North Star Review Board.

Adults with GM1, parents of diagnosed children, and legal guardians can all take part, anywhere in the world. If you are the caregiver for someone with GM1, please consider joining. The more data that becomes available, the faster treatment can be developed.

Register now for the GM1 Matrix or learn more about the study.

7. Sign a Media Waiver & Share Your Story

Sign our media waiver and send us photos of your family that we can use in our media and outreach. Photos are very persuasive and humanize this disease in a way that facts and research can’t. When you allow us to use your photos, we can spread awareness much more effectively.

Share your story so we can let those less familiar with GM1 understand what a journey to diagnosis can look like and what it’s like to manage this disease day to day. The more people know, the more they’ll want to help us create change.

8. Subscribe to the Cure GM1 Catalyst

By signing up for our monthly newsletter you’ll get updates about GM1 research initiatives, information about our most recent awareness campaigns, and news about the GM1 landscape and community. It’s a great way to stay continually active and informed.

9. Attend our Annual Conference

Most every year Cure GM1 hosts a conference where clinicians, researchers, biotech representatives, and patients meet to learn about clinical trials and research progress, to hear perspectives from doctors and patients, and to meet and connect with one another. Attending strengthens our community. It also helps us spread awareness, share important information, and gives you a space to receive support and community from people who share your experiences. Registration becomes available a few months before the conferences, which we’ll announce well in advance, so follow us on social media and subscribe to our newsletter.

10. Support Us While You Shop

Large extended family group photo outdoors including a child with GM1 in a wheelchair

Many retailers offer options to select a charity as your default so that a portion of your purchase gets donated to us. These include:

You can also support us through regular fundraisers from vendors who have charitable programs. Proceeds from fundraisers through these partners help support research:

Parents kneeling beside their child with GM1 in a stroller at what appears to be a theme park

Every Little Bit Counts

No matter how you choose to support us, it helps and it matters. We appreciate the time and effort you take to help us. Because of you, we get closer to finding treatment for GM1 gangliosidosis every day. Thank you.

Ways to Give – Your Support Matters

Charity Miles | Walmart RoundUP | Facebook Fundraisers | Donate | Set up a Recurring Donation

Visit our Take Action page for more ways to support our community