GM1 Day 2023 was a huge success!
We got 11 proclamations for GM1 this year, bringing the total up to 15! This was an incredible surprise and helped us spread awareness about GM1 to more people than ever before. Watch our video to see which families and states helped us get there!
California’s proclamation in particular was a big win. It required the passing of a resolution in the state senate, which it did unanimously. Thank you so much to the Law family for getting in touch with California representatives and traveling to Sacramento to get the resolution passed.
So many people in our community shared the number one and coloring pages, wore GM1 Day colors, and put on fundraisers. Together, you created a vibrant presence, which spread awareness of GM1 beyond our community.
An enthusiastic thank you to the GM1 community for showing up and advocating. GM1 Day was effective and powerful because of your participation! We could not do what we do without you. Here’s to hoping next year will have an even greater impact.
Registration for the 2023 International GM1 Community Conference is now open!
We invite everyone in the GM1 community, GM1 families, biotech professionals, physicians, and the general public to attend the 2023 GM1 Conference, which aims to foster community, connection, and hope. Register before July 7 to get 10% off with the code EARLYBIRD at checkout. GM1 families register for FREE! We hope to see you in the Bay Area or online on September 22.
Become a Conference Sponsor
Sponsorship helps us cover overhead costs and keep the conference free for families. In turn, this supports our critical mission to improve patient advocacy, awareness, and community as well as to to improve and save the lives of those impacted by GM1. Contact us today for a sponsorship packet and more information.
Passage Bio
Passage Bio is on track to report interim clinical data for PBGM01 for GM1 gangliosidosis in 2023. Read the press release here.
Lysogene
Unfortunately, liquidation and delisting of stock are now underway for Lysogene. Read their press release here.
Community Efforts
Asia’s Story
Asia is a cheerful, curious little girl, who sadly has GM1 gangliosidosis. Read and share her story to spread awareness. She, along with everyone else impacted by GM1 are in desperate need of a safe, proven, and effective treatment.
Caring for a child with a genetic disorder
In this moving article, Shilpa Banerjee relates the emotional impact her infant daughter’s GM1 diagnosis had on their family. “We realised the only choice was to surrender to this reality, and make the most of the time we had with her.” Please read and share where you can.
Support Cure GM1
New Newborn Screening Collaboration
We are pleased to announce a new research collaboration with the Gelb Laboratory at the University of Washington. This collaboration aims to improve the understanding of GM1 biomarkers for newborn screening. To do this, blood and urine samples from those with GM1 are needed. If you are in the US and willing to help from the comfort of your home, please email info@curegm1.org. See more ways to help on our take action page.
Happy Father’s Day!
On June 18th, we will celebrate all our amazing GM1 dads! They are caretakers and providers; our strength and support. We would be lost without you. Shop Cure GM1’s Father’s Day designs to help advance rare disease research! Contact info@curegm1.org with your photos to be featured for Father’s Day!
May Birthdays
- Niamh – May 15th
- Kate – May 17th
- Gabriel S – May 24th
- Gabriel F – May 25th
