Please join our family with our annual Love Some1 with Glut1 fundraiser in honor of our Amazing Grace.
Grace was diagnosed in 2008 with Glut1 Deficiency Syndrome, the 86th person in the world to be diagnosed with this extremely rare genetic disorder. Today there are only several hundred diagnosed cases.
Prior to diagnosis, Grace's symptoms included seizures, developmental delays, low muscle tone, ataxia, paroxysmal abnormal eye movements. Grace started the Ketogenic Diet post diagnosis which improved her quality of life and reduced/elimitated most of her symptoms. The KD is the standard treatment for Glut1 DS though it is not a cure.
Grace is now 13 years old, a ray of sunshine with the best sense of humor and a bright personality. She was recently awarded citizen of the month at school for her empathetic and caring ways. We are so proud of her!
We are fundraising because we Love Some1 with Glut1. Grace continues to have daily seizures, has a developmental disability & slow processing along with mild Glut1 symptoms. Our hope is for a CURE for Glut1 DS not only for our Amazing Grace but for everyone living with Glut1 DS. Alone we are rare and few but together we are strong!!
Please join us and help make a positive difference in the live's of those living with Glut1 DS.
Joanna, Brian, Gracie and Lilly
The Love Some1 with Glut1 annual campaign is the signature awareness and fundraising event for the Glut1 Deficiency Foundation, running from February 14-29, Valentine's Day through Rare Disease Day. It is an important opportunity to educate others and raise much-needed funds to help better serve the needs of our patient community through our mission programs for increased awareness, improved education, advocacy for patients and families, and support and funding for research.
learn more about love
messages from the heart of our community
learn more about Glut1 Deficiency
our new video to help raise awareness and improve education
please visit our website for more information