Meredith Lynn

Supporting: Love Some1 with Glut1 2022 for Glut1 Deficiency Foundation



My name is Meredith Lynn. I am the sixth of seven children, and the only one with Glut1. I started having symptoms of Glut1 very early. I was delayed in reaching some of my milestones, like walking a little later than siblings and talking in single word sentences for longer than anticipated. I had my first movement episode, which I call "The Wiggles" when I was two. I always struggled in school and developed a learning disability. This never stopped me from trying my best. Without a proper diagnosis we didn't know what caused the wiggles and my parents would give me Orange Juice or sugary snacks to try  to get them to slow down.

It wasn't until I was 18 that my Neurologist attended a Glut1 Conference in Indianapolis. She called from the conference and scheduled a Lumbar Puncture in June of 2012. I started my Senior Year of High School in August that year, and began the Modified Atkins Diet in September. I've been on MAD since diagnosis, and though it is challenging at times, I feel better eating the high fat low carb lifestyle. In that final year of high school I went from a 2.4 GPA to a 3.5 GPA, I wasn't so tired in class, and I went to college and graduated with Bachelor's Degree. I now live with my boyfriend, who is teaching me to drive. I very rarely get the wiggles anymore, unless I am under extremely high stress; when that happens we are able to very quickly combat it with a high fat snack and some rest. I currently am working full time as a Special Ed Assistant in a local elementary school. 

I am one of just a few hundred with Glut1. I am one of only about 10% that have a non-epileptic form of Glut1. In about 4/5 cases dietary therapy has been seen to be the best treatment for this rare disease, and right now this is the only known treatment. By donating to Glut1 100% of the funds goes directly to Glut1 research and benefits someone with Glut1. Future treatments, and hopeful cures, are unclear, but will always be bright when you Love Some1 with Glut1. 

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

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