Wow, what a year it has been!
One year ago, our family started our Glut1 journey. There were ups and downs, many downs if I am being honest. Tim and I repeatedly told ourselves that it may never get easier, but we will get better!!
To see how far August has come in one year being on the ketogenic diet is beyond amazing. To see how far we have come with managing his ketogenic diet is just as amazing. We could not have done this without the support of our family and friends, a great pediatrician, our neurologist, and our dietician. Auggie is walking and talking and playing like a typical 2 1/2 year old. It's wonderful to watch :)
However, this is a life long condition for Auggie-and everyone who has Glut1 and the ketogenic diet is not for the faint of heart-it's hard, real hard. But the reality is our journey does not stop here. I hold out hope that one day there will be a new reality for those suffering with Glut1, but we need your help. Please consider donating if you can, every little bit helps.
We love some1 with Glut1 and his name is August Brunst :)❤️
Each year, from Valentine's Day to Rare Disease Day, the Glut1 Deficiency Foundation hosts the Love Some1 with Glut1 campaign. It 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
Shine Like Some1 with Glut1
learn more about Glut1 Deficiency
from our brochure here