Giving Tuesday and Year-End Giving will be Here Soon!

November 28th, 2023 is Giving Tuesday. This is one of the best days of the year to donate, because your gift will go the farthest. Our annual Triple Play match will TRIPLE your donation between November 21st – 28th. Here’s how it works. You give a donation, then our board matches it up to $7,500, then our anonymous donor matches it again up to $7,500. Whatever you donate will yield 3x that amount for Cure GM1!

Don’t miss this opportunity to help us make progress in our drug development, research, and advocacy efforts — and to close out 2023 for yourself with a fully tax-deductible contribution towards continued progress. Families need your help, and your gift matters.

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Presentation on GM1 Study at NORD 2023

A special thank you to all the GM1 caregivers who contributed to the study, “Humanistic burden of neurodegenerative lysosomal disorders in the US: insights from caregivers of patients living with GM1 and GM2 gangliosidoses”, which was presented on at the National Organization for Rare Disorders (NORD) Conference in October. Not only did this study help make GM1 more visible, the data it captured will help us in our work toward treatments and therapies for GM1. Many GM1 caregivers participated in this study, which highlighted their burdens. We are so grateful to all who participated and worked to bring this project to fruition. Thank you. 

GM1 Advocacy at Meeting on the Mesa 2023

Cure GM1 president and founder, Christine Waggoner, shared her broad experience and knowledge during the panel discussion, “Opportunities and Benefits of Early Patient Engagement in Cell and Gene Therapy Development” at Alliance for Regenerative Medicine’s Cell and Gene Meeting on the Mesa 2023. We are honored Christine was chosen to speak alongside other expert panelists, and we are grateful she had the opportunity to spread awareness and advocate for GM1 families.

AllStripes Acquired by Picnic Health

AllStripes, an organization we worked  with to analyze and give insight to GM1 patient medical records to aid researchers and drug developers, has been acquired by PicnicHealth. They have securely collected and compiled the complete de-identified medical records for over 30,000 patients. PicnicHealth will offer free accounts to those from the GM1 community who created AllStripes accounts so you can continue to manage your records if you wish to continue with the service. Thank you to everyone who participated in AllStripes and other data collection initiatives. 

  • AllStripes accounts will be accessible until November 22nd
  • AllStripes users will be offered an account with PicnicHealth [see demo] at no cost
  • Any medical records currently in AllStripes accounts will be securely transferred over to the PicnicHealth platform in the next 3 weeks.
  • If individuals want to discontinue service and close their accounts, they can email AllStripes at support@allstripes.com

CombinedBrain Collaboration and Gelb Newborn Screening Biomarker Project in Full Swing

Cure GM1 is proud to support the creation of a GM1 biobank in collaboration with CombinedBrain. If you are in the US and are interested in contributing a blood and urine sample from the comfort of your own home to support GM1 research, please mail info@curegm1.org.  In addition, recent collection efforts will support a biomarker research study for newborn screening being conducted by the Gelb Laboratory at University of Washington.

Fundraise for Cure GM1 this Year-End

There is no better way to grow our community, to spread awareness, and to ensure support into the future than hosting community fundraisers. When members of our community reach out to their colleagues, neighbors, friends, and loved ones for support, it is given in abundance. So, if you have ever considered putting on a fundraiser for Cure GM1, we would be grateful for you to consider doing one now.

For Giving Tuesday, we are looking for some willing families to help us raise funds for our Year-End campaign. We want to make it as easy as possible for you, so we’ll create graphics for you and set up a dedicated fundraising page. If you’re interested, please email us at info@curegm1.org. 

Major Gifts!

Cure GM1 received two major gifts this month. Both are anonymous gifts and greatly appreciated. We received a $60,000 gift which has already been designated towards an upcoming research project, which we can share more about soon. We also received a $5000 gift in honor of Clara.

Halloween Cuties!

It was such a joy to see the inventive, fun, and spooky costumes our community wore this year! We hope you had fun dressing up and celebrating Halloween, and that you have enough candy to last you into 2024! 

Thank You Half Marathon Fundraisers

Ilona and her family of 12 from the UK are participating in the Dorney Lake Run on November 11th to raise money for Cure GM1. See their fundraiser here. They will run in honor of two boys in their family who have been diagnosed with GM1, one of whom has tragically passed away. Their boys and their family are in our hearts and minds. We are honored and so grateful they are fundraising for our cause. Thank you. 

November is National Epilepsy Awareness Month

Epilepsy sadly affects many of those living with GM1. It can have painful, deleterious effects and can be a puzzle to manage. Help us share awareness for this condition and for GM1 by sharing the hashtags: #NationalEpilepsyAwarenessMonth #EpilepsyAwarenessMonth and #NationalEpilepsyMonth

Write for GM1

NaNoWriMo takes place in November, as well as National Life Writing Month. For all the writers in our community, this is a perfect time to put your GM1 experience on paper and perhaps craft a story to help GM1 advocacy efforts. Blogs, short stories, novels, articles, poems – any and everything that will help you make sense of this disease will also help us in our fight against it. We hope you consider sharing what you write with us.

Support Cure GM1

You have many ways to both support Cure GM1 and cross some holiday to-dos off your list this month, including:

  • Christmas Card Shop – send a Christmas beautiful popup card to a loved one with a special message, and support Cure GM1. Cards ship December 15th.
  • Holiday Advocacy Gear – Shop the “All I Want for Christmas is a Cure” Hoodie and other items to support Cure GM1!
  • iGive – Make purchases from major stores and support Cure GM1! Get a $5 new member shopping bonus when you make your first purchase within 30 days. Please join!
  • Chocolates – The perfect gift for when you don’t know what to give, or if you just want to gift yourself 😉

Happy Birthday!

Joey – Oct 14

Ways to Give – Your Support Matters

Charity Miles | RoundUp App | iGive | Walmart RoundUP | Facebook Fundraisers | Donate 

 Set up a Recurring Donation

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