February is Rare Diseases month and for our
family that means a lot. Ethan, our son,
was diagnosed with a rare disease called, Glucose 1 Transporter Deficiency
(Glut1). For Ethan is means daily
uncontrollable seizures. They are brief
seizures, lasting about 3-10 seconds, but are very frequent with approximately
20 on a good day and over 100 on a bad day.
Ethan: I will be graduating high school this May from Northern Waters Environmental School. I have been working with DVR to help find a job that I like and will be successful at after high school. I still enjoy video games, watching wrestling and visiting with the many people who come to our resort. The G1D is a great organization and has helped me and others with much information that we would otherwise not receive. Thanks for supporting me and the Glut1 foundation and I hope to see you around soon.
Love Some1 with
Glut1 Campaign: Every year, the Glut1 Foundation holds an annual “Love
Some1 with Glut1” fundraising campaign.
Since we started joining this campaign ten years ago, we have had an
amazing amount of support from our family, friends, church family, and the
Hayward community at large. We are continually amazed and grateful for having
such a strong community of support.
We are joining this campaign again this year and invite you to join us. Ethan has set the same goal of raising $10,000 this year and we know that with everyone that loves and supports him he will be able to reach that goal. It will run from February 14-28th.
We hope you will consider donating to Ethan’s fundraising campaign. If you prefer not to donate online, you can make a check out to G1D and mail to Ethan at: 7476N Pats Landing Rd, Hayward, WI 54843.
The Love Some1 with Glut1 annual campaign is the signature awareness and fundraising event for the Glut1 Deficiency Foundation, running from February 14-28, Valentine's Day through Rare Disease Day. It is an important opportunity to educate others and raise essential 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.
In addition to our regular activities, we are working on some big and important goals for 2021:
- capture patient voice through a large-scale community survey
- host our first virtual family conference
- host our first scientific convening for researchers and clinicians to exchange knowledge and ideas
- begin building a collaborative research network to drive progress
- create and begin implementing and funding a strategic research plan
- build and launch a natural history study to better understand life-long patient experiences
I'm More than Some1 with Glut1
the campaign video
learn more about Glut1 Deficiency
from our new brochure here