Silas & Kane’s Annual Glut1 Fundraiser

by Silas and Kane Bourget

Supporting: Love Some1 with Glut1 2022 for Glut1 Deficiency Foundation



Hi Friends !

it’s that time of year again where we beg our friends and families to share our fundraiser and donate to Bourget Boys Cause!

As most of you know, Silas & Kane were diagnosed with Glut1 at 6months old. We started the ketogenic diet right away and they have been seizure free since starting keto! (4yrs and counting!)

although we are so thrilled by these results, the boys still struggle daily from many other symptoms of Glut1.

At 4.5yrs old, they are still non-verbal. They have a very hard time with their strength, balance, & coordination. Low energy is also a major battle for them, as they cannot keep up with certain physical activity without getting quickly drained and needing rest. Extreme fatigue can cause uncontrollable muscle movements & spasms which can be extremely uncomfortable and sometimes painful for them. Heat has shown to be a very big trigger for the boys, causing them to feel sick & fatigued if they are not constantly being cooled down. Occasionally heat has caused the boys ketones to get very high and we have had to medically intervene to bring ketones down.

Although they have their daily conflicts, they really know how to persevere and show their strengths! They are both incredibly smart! Even though they can’t communicate, it does not mean they don’t understand what someone is saying to them. They understand pretty much everything! They are extremely helpful and always want to lend a helping hand when they see an opportunity. They are always down to make new friends and try something new. They are extremely affectionate and love to show the ones they love how much they care.

Now that everyone knows a little bit more about my boys, hopefully this brings more awareness as to why the Glut1 Foundation & raising money for this cause is so important. Your donations fund research to help better the lives of human beings living with Glut1 like Silas & Kane. Every single donation makes such a huge difference!!

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?