Tessa's Love Some1 with Glut1 2022

by Tessa Breen

Supporting: Love Some1 with Glut1 2022 for Glut1 Deficiency Foundation



Dear Family & Friends,

We hope this note finds you healthy and happy. As our family begins 2022, our focus has been on Tessa’s future. This year, at age 21, Tessa will graduate from high school with a life skills diploma and move into the next phase of her life. Leaving the known behind is an unsettling experience, but together with Tessa, we are weighing out transition options and trying to come up with the right plan for her future. Some things are easy...she'll always have the love and support of family and friends. Other things...well, we're scared. Tessa has had to use her wheelchair more often due to her movement episodes caused by her rare genetic disorder, Glut1 Deficiency. And though she hasn't had a significant seizure in many years, she still experiences pre-seizure activity in testing and our guard is always up. 

So how does a parent get beyond the feeling of helplessness? For us, we turn our reactions into action. We became a part of the Glut1 Deficiency Foundation 12 years ago and found other families facing the same issues and who were aligned with similar goals such as finding better treatments and ultimately a cure of Glut1 Deficiency. The Foundation has always made funding research a top priority and this year is no different. We're asking for your help in bringing answers to so many that face an unknown future. We appreciate every one of you for your continued support and for giving us a reason to turn 2022 into a celebration of hope!

With gratitude and love,
Gary, April & Tessa

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?