Lochlan’s Glut1 Fundraiser

by Teresa Gann

Supporting: Love Some1 with Glut1 2022 for Glut1 Deficiency Foundation



When Lochlan was born she was a happy, healthy, full-term baby. She started to feel floppy around 6 weeks of age. Also at 6 of age she started having rapid eye movement where they shook really fast back and forth. She then began to have aberrant gaze saccades a few weeks later. By 4 months of age she was having 100’s of seizures a day. She was diagnosed with Myoclonic Epilepsy by 5 months old and put on medication. When she was months of age she was on 2 different seizures medications, and ended up being hospitalized for an upper respiratory infection. Dr’s began to run further tests to get to the bottom of what was going on. At that point she was still having seizures all day and the eye movement she was having didn’t registering on her EEG. They then decided to do a lumbar puncture and CT scan to rule out Neuroblastoma. It was then discovered from her lumbar puncture that her glucose was low. She was immediately started on the ketogenic diet and within 2 weeks her seizures and eye movements stopped. She began to reach milestones, etc! Later her diagnosis was confirmed through genetic testing. Keto truly has changed Lochlan’s life! She is a happy, healthy, and energetic 8 year old! 

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?