As most of you know, Paislee was diagnosed with Glut1 almost 2 years ago. We went from thinking that our girl may never walk to her running after her sister and that is all thanks to early diagnosis and an early start of treatment. This is why it is so important to raise awareness of this rare disease and you can help with that. Every year from Valentine’s Day through to rare disease day the Glut1 foundation runs a campaign to raise money and spread awareness.
All of this year's campaign donations will be used to drive research progress and provide funding for projects in their new Research Compass.
My little monkey along with all of the other Glut1 warriors and future warriors are forever grateful for all of the support.
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