Call for Teams for Our Upcoming Move for GM1 Fundraiser 

This August our new Move for GM1 Fundraiser will take place. This is a fundraiser where you pledge a donation for the miles you move. We’re asking for members of the GM1 community to organize teams from their local communities to participate in walks, runs, bike rides, hikes – any way you like to get moving! To get involved, email us at info@curegm1.org, and we’ll get a team page set up so your team can track your miles! 

Your Last Chance for 10% Off 

This week is your last chance to get 10% off tickets to the 2023 International GM1 Hybrid Community Conference with code EARLYBIRD. There will be many excellent speakers and opportunities to network and engage. Register today!

News

Enrollment Reopening for Passage Bio Imagine-1 Study

Passage Bio announced new criteria for their Imagine-1 Dose 3 Cohort Study, and that they are re-opening enrollment for the study. To learn more about the dose 3 cohort, you can consult your physician, send Cure GM1 questions at info@curegm1.org, visit the Imagine-1 Study page on Passage Bio’s website, or look at the clinical trial info on the clinicaltrials.gov site. 

Third Publication from Gelb Laboratory Includes GM1

Cure GM1 provided seed funding for, and families from the GM1 community provided dried blood spot samples to the Gelb Laboratory at University of Washington in 2019. This has resulted in a third publication from Gelb that includes GM1! Not only has this publication brought more visibility to GM1, it has also gotten us one step further on the journey toward newborn screening! 

The next project to improve the understanding of GM1 for newborn screenings is in the works with Gelb, and we again request US families to volunteer to provide blood and urine samples from the comfort of home. Email info@gm1.org to volunteer!

New Bill May Help Disabled Travelers Who Fly

The Mobile Act aims to improve the security screening process, transfers onto planes, issues with damaged and lost wheelchairs, and ensure mobility aids can fit on planes for passengers with disabilities. It would also potentially allow passengers to board flights in their wheelchairs. Read more about the bill here. 

Community & Efforts

Rare Across America is Back this August

Rare Across America is a movement organized by the EveryLife Foundation to encourage and assist members of the rare disease community to meet with their members of congress to share their stories and their most important issues. EveryLife will arrange for Rare Disease Legislative Advocates to schedule meetings for you and help you to prepare for your meeting. Be an advocate for GM1 and register to meet your representative. 

3rd Annual Cure Kinley & Kennedy Golf Tournament

Registration is open for the 3rd Annual Cure Kinley & Kennedy Golf Tournament benefiting the Cure GM1 Foundation! This event will take place on Saturday, July 22nd in Westminster Colorado. They will have hole competitions, professional long driver, lunch, and a raffle and silent auction. If you live nearby, please consider attending. Thank you to the Harrison family for hosting this event!

Learn About Placebos in Rare Disease Trials

To learn more about placebos and their importance in studies, take a look at the upcoming What is a Placebo in a Rare Disease Trial Webinar and register to learn more!

Happy Birthday!

  • Harrison – May 19th
  • Leonor – May 22nd
  • Oliver –  June 6th
  • Julia – June 9th
  • Isabella  – June 9th
  • Violet – June 11th
  • Aryana – June 27th
  • Kinley – June 26th

Caregiving Tips

Summer Tips for Caregivers

Take care in the summer heat and sun with these helpful tips for modulating your child’s temperature: 

  1. Give cool fluids
  2. Go somewhere with cooler air, if possible
  3. Take a dip in cool water
  4. Apply cool cloths or ice to key circulatory points, like the neck, wrists, and chest
  5. Dress your child in light, breathable clothing
  6. Keep your outdoor time to mornings and evenings
  7. Use a fan

Get Up to Date on Seizure First Aid 

Take Epilepsy Foundation’s short 30 minute course and become seizure first aid ready. You’ll learn basic procedures for responding to someone having a seizure. The class is presented in an interactive eLearning format with animations, videos, and activities. The class is on demand, so you can sign up any time.

Support Cure GM1

Call for GM1 Family Photos

We are putting together a slideshow of as many beautiful GM1 families and children as possible to present at the conference in September. If you would be willing to share photos of your child and family, we would be so appreciative! Please send photos to info@curegm1.org. 

Spread Awareness with Cure GM1’s New Information Sheet

Our new information sheet gives an overview of the Cure GM1 Foundation and our mission in a concise, easy-to-digest format. Please read and share with your friends, family, and community!