Dara O’Reilly’s Fundraiser

by Adam O'Reilly

Supporting: Love Some1 with Glut1 2022 for Glut1 Deficiency Foundation



We are fundraising for the Glut1 deficiency foundation’s annual campaign. This is an amazing charity that work so hard to advocate for all aspects of this rare disease.

This year most of the money is going to be spent on research. There is still so much to be learned about Glut1 deficiency syndrome and some research is already underway. Dara is still so young at nearly 3 years old, our hope is that in his lifetime we will know so much more about the way his body works and possibly find a cure. It is doubtful that the damage that has already been caused will be reversed but we hope there will be more treatments like gene therapy or drugs in the future and also a way that other babies will be diagnosed close to birth. 

Speaking of treatments… Dara started the classical ketogenic diet in Dec 2020. Over the past year we have watched him develop slowly but surely both physically and cognitively and although we are nearly afraid to say it he has also been seizure free since beginning the diet. There is no doubt that this treatment is doing its job and we are looking forward to hopefully seeing him catch up with his peers. Without this diagnosis I hate to think what path we would be following. 

We would like the thank the Glut1 foundation for their constant efforts at facilitating research, spreading awareness of this condition and connecting patients. 

Thank you for your donation! 

Ailbhe and Adam O’Reilly

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?