Our family participated in our first fundraiser for the Glut1 Deficiency Foundation just one month after Reece was diagnosed in 2015. At the time that Reece was diagnosed, there were just 500 known cases of Glut1 Deficiency Syndrome in the world! We felt like one of the ways that we could help Reece was to fundraise for the Glut1 Deficiency Foundation. With so little government funding available for rare diseases, we know that the future of research, advancements, diagnosis, and improvements in treatments and quality of life for Glut1 Deficiency patients rests largely in the hands of families. That is why we continue to fundraise every year to help Reece and the community of Glut1 patients whom we have come to know and care about.
Before Reece was diagnosed, we spent SEVEN YEARS searching for help and running out of hope. We immediately found help and hope in the Glut1 Deficiency Foundation after Reece’s diagnosis on 1/5/15. Kelly attended her first Family Conference in July 2015 in Orlando. It was a life-changing experience filled with support from other families and education from medical experts. Matt and Reece joined Kelly at the 2017 Nashville Conference and the 2019 Washington DC Conference. We are looking forward to seeing our Glut1 family again at the San Diego Conference this summer!
The Glut1 Deficiency Foundation is a nonprofit organization led by parents of Glut1 Deficiency patients, including Kelly who has served on the Board since 2017. We are truly grateful to our family and friends who have donated to our fundraisers through the years. We appreciate your support that will directly benefit research efforts.
Reece, Kelly & Matt Jones
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