Determined for Dominic

by Maria Rebbecchi

Supporting: Love Some1 with Glut1 2022 for Glut1 Deficiency Foundation



As most of you know Dominic was diagnosed with Glut 1 Deficiency almost 9 years ago. At the time of diagnosis it was one of the most challenging moments we have ever been through as a family. We couldn't have gotten through all of this without the Glut 1 Foundation and the incredible support from our friends and family. We have met so many amazing families who share this diagnosis with Dominic. It truly connects us in a very special way. We have been so fortunate that Dominic tolerates the ketogenic diet for treatment and that it has helped his symptom management tremendously. We are still hopeful for new treatments in the future; treatments that would hopefully be easier to handle independently as Dominic enters into adulthood. The awareness and research in Glut 1 Deficiency had increased significantly over the past 5 years. Thanks to all the generous donors over the years, the Glut 1 Deficiency Foundation has been able to fund research projects and targeted projects based on the communities need. The Rebbecchi Family can not thank you enough. 

We continue to be amazed at Dominic's courage. He has to adhere to a strict low carb diet/high fat that most do not have to do; especially as a child.  We wish we were as courageous and strong as he is!

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?