about
GLUT1 Deficiency is a rare, metabolic condition where glucose transport into the brain is impaired, causing a wide range of neurological symptoms. Ketogenic diets are the current standard of care.
Both the disease and the treatment can create unique challenges for the person diagnosed and also for the whole family. It may be helpful to have someone to reach out to for specific information or questions who has a level of compassion and understanding that only someone with shared experiences can offer.
We've created the Parent Partner Project to help create this network of support.
how it works:
The Parent Partner Project is open to members of the Family Network who have GLUT1 Deficiency - parents, caregivers, grandparents, aunts, uncles, cousins - anyone who would like to connect.
Parent Partners have completed a peer support training course from the Child Neurology Foundation and are serving as volunteers in this role. They are here to help with questions, information, support, and understanding, but they are unable to give medical advice.
Any information you provide on the application form or share with a Parent Partner will be kept confidential.
Steps for Participation:
- learn more about the Parent Partners below
- complete the application form
- your information will be passed along to the Parent Partner you request as a match
- the Parent Partner will reach out by email to introduce themselves and start the conversations
- communication method will be decided on together - email, phone, or Zoom
parent partners
meet
Cari
- mom to Alena, Kyle's twin
-
mom who is also navigating Kyle's other diagnoses: ADHD, autism, dyslexia
-
full time working mom
-
currently trying to figure out what life is like without kid activities and therapies every day
- I love arts and crafts, the mountains, camping, my family, and my dogs
meet
Glenna
- mom to Maggie who has a different rare genetic epilepsy
- former Kindergarten and first grade teacher
- current Sunday school teacher
- current G1DF Executive Director, founding board member
- love arts and crafts, quilts, flower gardens, the beach, rescue animals, DIY projects, camping, and my family
meet
Jennifer
Life Experiences:
- pediatric nurse
- homeschooled 3 children from K-12
- grandmother
- enjoys sewing, biking, snorkeling, gardening, hiking, books and visiting new places
meet
Julie
Name: Julie Dix
Location: Seattle/Tacoma, Washington USA
Glut1 Connection: Mom to Stevie - 22 years old, diagnosed at age 14
Symptom Experiences: seizures, speech and language (non- verbal), developmental delays, toe walking/ gait issues
Treatment Experiences: seizure medication, ADHD medications, ketogenic diet 4:1 ratio (current) along with gluten free for celiac, C7 oil trial for one year, speech and occupational therapy when he was younger
Life Experiences:
- grew up in the Midwest, settled in Pacific Northwest via Arizona and New Mexico
- full time caregiver
- 2 other grown children- Megan and Logan
- Celiac so gluten free
- Chicago Cubs fan
- enjoys photography, raising chickens, fostering dogs, gardening, genealogy, traveling (Norway 2025), and being with my family
meet
Maria
Name: Maria Rebbecchi
Location: Pine Hill, NJ (South Jersey)
Glut1 Connection: Mom to Dominic - 14 years old and diagnosed at age 3
Symptom Experiences: episodic movements and hemiplegia episodes, migraines, developmental delays
Treatment Experiences: medications, ketogenic diet for 11 years, now on standard diet
Life Experiences:
- registered nurse
- past G1DF Board President
- mom to daughter Iris and our 2 dogs
- loves travel, music, cooking, and spending time with family and friends
meet
Sandra
Name: Sandra Ojeda
Location: Southeast Texas USA
Glut1 Connection: Mom to Sofia - 15 years old and diagnosed at age 3
Symptom Experiences: seizures, movements, speech and language, developmental delays
Treatment Experiences: medications, ketogenic diets, supplements
Life Experiences:
- former scientist and teacher
- current G1DF Science Director
- speaks Spanish and English
- love traveling, nature, the beach, the outdoors, starry skies, sunrises and sunsets, yoga, and my family
meet
Twinkle
Name: Twinkle French Schottke
Location: Grove City, Ohio (Southwest of Columbus)
Glut1 Connection: Mom to Kayle age 34 diagnosed at age 27
Treatment Experience: medications, MAD diet
Life Experience:
- Infant Mental Health Specialist
- past Special Education Teacher
- extensive work with pregnant moms and their families
- mom to Gavin and Kayle who was diagnosed with GLUT1 as an adult and has global delays
- loves to spend time with family, shopping, travel, cooking (or trying to), hearing concerns and finding solutions
Please reach out to the GLUT1 Deficiency Foundation if you are interested in serving as a Parent Partner.