Welcome to Gracie?s annual Glut1 Fundraiser!
This blonde beauty is my Amazing Grace. She is smart, witty, charming, spunky, loves to dance and sing, enjoys all sports including archery, horse back riding, baseball, cheering on the Eagles (Super Bowl Champs) with her Daddy and so much more.
Gracie has to deal with a lot more than most kids her age because of a very rare genetic disorder called Glut1 Deficiency Syndrome of which she was diagnosed with just before her second birthday. Her symptoms include seizures, low muscle tone, ataxia, irregular eye movements and significant developmental delays. Gracie started the Ketogenic diet, the only known treatment for Glut1, following diagnosis. The KD gave Gracie global improvement and allowed her to play catch up, getting within about 2 years of her peers academically. She started to walk at age 3 but still has a drunk sailor walk, a march of determination, lack of a smooth or fluid movement in motion.
Gracie is now 11 years old and in 5th grade. Life with Glut1, the ketogenic diet and many medications makes life difficult and it weighs not only on Gracie but the entire family. Gracie's seizures and behavior have worsened over the past couple of years leaving us with more questions than answers.
My hope and prayer is to find a better, easier treatment option for my Gracie, and ultimately, a GURE for Glut1.
What did your 2017 donation go towards you ask and why should you donate again this year?
Some highlights that our supporters made possible in 2017
We brought families and professionals together from 26 states and 11 countries to meet,
share, and learn at our 7th biennial conference in Nashville.
We raised awareness and spread education in the medical community through our
Find Some1 with Glut1 program, giving talks and hosting exhibit booths at 6 professional
national and international conferences.
We funded $80,000 in research grants, bringing our total to $500,000 in awards for
bold and innovate ideas to help bring better understanding, better treatments,
and ultimately a cure.
We expanded our online and print resources, including a revamped website and a new
brochure to help in educating others and raising awareness.
We mailed over 50 welcome packets with information and resources to newly diagnosed
families in the United States and around the world.
We took part in advocacy activities to give the Glut1 Deficiency patients, families,
and the community a voice in the rare disease world.
Your donation will bring hope and help to so many of our Glut1 families.
Thank you for showing your love for Some1 with Glut1 and for helping us bring help and hope to our Glut1 Deficiency community.
Joanna, Brian, Lilly and Gracie
Glut1 Deficiency is a rare genetic condition where glucose doesn't reach and fuel the brain properly, resulting in a wide spectrum of neurological issues affecting brain growth, learning, movement, speech, and often causing seizures. There are fewer than 1,000 people diagnosed in the world, but experts believe there are many, many more patients still waiting to be found. Because Glut1 Deficiency is so rare, many in the medical profession don't have the knowledge they need to diagnose and properly treat it.
There is a very effective treatment for most patients - a ketogenic diet, and the earlier patients are diagnosed and start treatment the better the outcome. As fortunate as we are to have the diet, it is not a cure, not a complete treatment, and it is not easy. We need more research for better understanding, better treatment options, and ultimately a complete cure.
The Glut1 Deficiency Foundation is working hard to bring help and hope to the Glut1 Deficiency community.
The Love Some1 with Glut1 annual campaign is our primary awareness and fundraising event. It runs from Valentine's Day (February 14th) through Rare Disease Day (February 28th), and it is an opportunity to spread awareness and raise much needed funds to help better serve the needs of the community. All donations help fund our mission programs for increased awareness, improved education, advocacy for patients and families, and support and funding for research.
some highlights our supporters made possible in 2017
Please help us continue our mission.
We can do so much more together than any of us can do alone.
please watch our special thank you video
Please visit our website to learn more about Glut1 Deficiency and the work of the G1D Foundation.