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Mission for Macie

by Macie Steele

Supporting: Love Some1 with Glut1 2022 for Glut1 Deficiency Foundation

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Macie's road hasn't been an easy one. It took a lot of years to finally figure out what was causing all of her symptoms. The right diagnosis brought a lot of answers, and it brought a community of support and a place to focus efforts on trying to help her. The Glut1 Deficiency Foundation has been a big part of that focus, and good things are happening for everyone who has Glut1 thanks to the work of the Foundation and the people who make it possible through their support.


We are so grateful to our friends and family who have helped us again and again give Macie, our family, and so many others hope for a brighter future ahead. It has made all the difference.





Each year, from Valentine's Day to Rare Disease Day, the Glut1 Deficiency Foundation hosts the Love Some1 with Glut1 campaignIt is an important opportunity to increase awareness and educate others about this rare disease while raising essential funds to help better serve the needs of our patient community through our mission programs.


In addition to our regular activities, we are working on some big and important goals for 2022

  • host our 9th family conference to bring families together to meet, share, and learn 
  • host our 2nd scientific convening for researchers and clinicians to exchange knowledge and ideas 
  • launch our Research Roundtable program to build a collaborative research network 
  • begin implementing and funding our newly developed patient-led Research Compass
  • launch a natural history study to better understand life-long patient experiences
  • expand our educational exhibits to reach and teach new audiences of medical professionals
  • create a new website to serve as a hub for information, support, connection, and hope


All of this year's campaign donations will be used to drive research progress and provide funding for projects in our new Research Compass.

Thank you for your part in helping us reach our goals and supporting our mission as we continue our work to bring help and hope to everyone, everywhere, who is affected by Glut1. 


Shine Like Some1 with Glut1






learn more about Glut1 Deficiency

from our brochure here














How would you like to support?

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