A Rewarding Conference
Thank you to everyone who attended this year’s conference, both in person and online. It was a rich, rewarding experience which included many impactful presentations, both from the scientific and advocacy perspectives. Industry experts weighed in on the future of GM1 and research progress, therapy dogs provided comfort, parents told touching stories, and key opinion leaders gave critical advice. We hope the event will inspire renewed determination to make continued progress and to continue to catalyze meaningful change.
“She has inspired me to strive to be the best version of myself I can be. This journey could have broken me, but it didn’t. It has made me a stronger, more compassionate, more thoughtful human being.”– Jenny Bragg
If you missed any part of the conference, you can see the presentations on our 2023 Conference Playlist on our Youtube Channel. Please help us make next year’s conference an even bigger success and take this brief survey so that we can improve. Additionally, consider making a donation to help us advance the many projects and endeavors discussed in the conference.
15,281 Miles Moved for GM1!
We are overwhelmed and grateful for the amazing dedication of everyone who participated in Move for GM1. So many of you got outside every week and even every day, putting in tons of miles and spreading awareness for GM1. We also had five families organize walks, including Move for Diego and Marley’s Miracle Mile. Thanks to you we raised $39,942. At just $58 shy of our $40K goal, we’re going to consider it met. We did it!
We have Prize Winners!
Robert Paul put in the most miles in a day with 56.5 miles, and Pete McCormack put in 623 miles total, the most miles of all our participants! Honorary recognition goes to Niclas Flysjö for running every single day since August 1st. Kudos and thank you for your hard work! While Move for GM1 has ended, you can continue to log miles using Charity Miles throughout the year!
Over the past several years, Cure GM1 has provided funding to TEGA Therapeutics for the development of an enzyme replacement therapy. We are excited to share that TEGA has been awarded a Phase I Small Business and Innovative Research (SBIR) grant ($461,701) from the National Institute of Neural Disorders and Stroke (NINDS) that will allow them to continue this research! The award will fund preclinical research, administering enzyme replacement therapy directly to the brain for treating the neurological effects of GM1 gangliosidosis.
Thank You Fundraisers!
- A big thank you to the Waun family for putting on the third annual Marley’s Miracle Mile in Conjunction with Move for GM1 this year! We are so grateful for families like yours who hold these critical annual fundraisers. They are a true labor of love and are a huge source of encouragement and support for the GM1 community.
- Another big thank you to baby Althea’s family for creating Adrian’s London to Brighton Off Road Ride for Cure GM1 Foundation. The ride was 98km (61 miles) and took Adrian six hours to complete! He rode on September 23rd, which would have been his daughter Althea’s 7th birthday. Born with GM1, she heartbreakingly passed away at only 14 months and 3 days old.
- Thank you to everyone who donated to our President Christine’s birthday fundraiser! She raises money each year for her daughter, Sweet Iris, and for all people living with GM1 in a myriad of ways, and it’s heartening to see our community’s continued support of her hard work.
Show us Your Spooky Season Spirit!
At long last we have arrived in October! For many this month is arguably the high point of the year. Leaves are changing color. Sweaters are emerging from hibernation. Pumpkin spice is prolific. And it’s Bat Appreciation Month, do you need to hear more? We want to see how you appreciate this cozy, spooky season! Send us photos of your cuties in their costumes and/or doing any and everything fall related. Even better if someone is wearing Cure GM1’s Halloween Gear! Email firstname.lastname@example.org with your festive photos!
Shanah Tovah & Yom Tov!
A very happy Rosh Hashanah and an impactful Yom Kippur. We hope those of you who celebrated are proud of the journey you’ve made this year and are looking forward to your next one. We also hope you had an easy, successful fast. Wishing you joy and prosperity in the coming year.
Back to School
We hope everyone had a great start to the school year. All children who are too sick to attend school or who did not live to school age due to GM1 are in our hearts.
October 15th is World Pregnancy and Infant Loss Remembrance Day
The GM1 community is sadly all too familiar with the loss of infants. On October 15th, World Pregnancy and Infant Loss Remembrance Day, we will honor the precious lives of all the GM1 babies who died too soon. Please help by spreading awareness about GM1 on that day, and especially by supporting bereaved parents, no matter how long ago they lost their child.
Support Cure GM1
We have a few great ways you can support Cure GM1 this month:
- Our Little Caesar’s fundraiser – perfect for observing National Pizza Month – goes until October 9th. Stock up on easy, cozy dinners to make your fall nights simpler.
- We have holiday chocolates for sale again! Support Cure GM1 with every indulgence, or give them as a decadent gift!
- We have joined iGive, an app that donates a percentage of your purchase total toward Cure GM1. Join now and get a $5 new member shopping bonus for Cure GM1 when you make your first purchase within 30 days.
- Maria – September 8th
- Nella – September 30th
Ways to Give – Your Support Matters
Visit our Take Action page for more ways to support our community