Board of Directors
Maria RebbecchiPresident [email protected]
Maria Rebbecchi is mom to Dominic, who was diagnosed with Glut1 Deficiency in 2013, at the age of 3. She resides in New Jersey with Dominic, her husband Tom, and daughter, Iris. Dominic has successfully been on the ketogenic diet for 10 years and has seen many improvements in his symptoms but still faces many challenges in everyday life. Motivated by her son’s challenges and diagnosis, Maria quickly became involved with the G1DF and was driven to help others who had gone through what she had experienced. Maria has been volunteering for the Glut1 Deficiency Foundation since 2014 and joined the Board of Directors in 2017. Maria is a registered nurse with 18 years experience in specialties such as ER and Urgent Care nursing. Maria’s passion is to help advocate for earlier diagnosis, spread awareness of Glut1 Deficiency, and support Glut1 families in need.
Kelly JonesVice President [email protected]
Kelly Jones holds a BA in Journalism/Public Relations from California State University, Chico. She has been employed by the Sacramento Kings of the NBA, as well as both residential and commercial HVAC companies, before concentrating on being a full-time mom. Kelly currently resides in Rancho Cordova, California with husband, Matt, and son, Reece. Reece was diagnosed with Glut1 Deficiency three days before his 8th birthday in 2015. She has served on the Board of the Glut1 Deficiency Foundation since 2017.
Rob RapaportSecretary [email protected]
Rob is a retired Product Safety and Regulatory Manager of Procter & Gamble with 30 years of experience. He earned a PhD in Environmental Engineering and Chemistry from the University of Minnesota and BS and MS degrees from Rutgers University. After retirement he worked with Secondary school teachers as a Resource Team member of the University of Cincinnati Engineering and Enhanced Math and Science Program (CEEMS). Rob volunteers with environmental organizations including Engineers without Borders and the Citizens Climate Lobby. Rob lives in Cincinnati, Ohio with his wife, Paula, and has a daughter, Sara, and son, JR. JR was diagnosed with Glut1 Deficiency in 2008 at the age of 17.
Debbie StoddardTreasurer [email protected]
Debbie holds a BA in Psychology from UCLA, an MS in Accounting and Taxation from SUNY Albany, and a BS in Occupational Therapy from USI. She is a retired CPA who practiced with KPMG as a Tax Accountant specializing in financial institutions prior to becoming a mom. She is also a retired OT who worked with at risk newborns in the NICU. Debbie resides in Evansville, Indiana with her husband, Greg, (past VP and founding board member of the Glut1 Deficiency Foundation), and her son, Dalton, who was diagnosed with Glut1 Deficiency at age 5. Debbie and Greg also have a daughter, Madison, who earned a BS in Biological Engineering from MIT and has conducted research benefitting Glut1 Deficiency.
Erin MeisnerDirector [email protected]
Erin is an Occupational Therapist who graduated from Thomas Jefferson University and currently works with children. She is the team captain for the Glut1 DS team in Penn Medicine’s Orphan Disease Center’s annual Million Dollar Bike Ride. Erin lives in the Philadelphia area with her husband, Walter, and daughters Gabriella and Millle. Millie was diagnosed with Glut1 Deficiency in 2012 at the age of 3.
Leigh HopkinsDirector [email protected]
Leigh Hopkins is a Senior Project Manager with the Center for Economic Development Research (CEDR) at Georgia Tech. Leigh holds a Bachelor’s degree in Forest Resources from the University of Georgia, and a Master’s degree from the Georgia Institute of Technology in City and Regional Planning. The Hopkins family (Leigh, Jeff, Cameron, and Rohan) live in Decatur, Georgia with their two yellow bellied pond slider turtles, Jaws and Pearl, and their two Nigerian pygmy goats, Marshall and Danzig. Now 12, Cameron was diagnosed with Glut1 Deficiency Syndrome at age 8 and is currently thriving with treatment from the Ketogenic Clinic within Children’s Healthcare of Atlanta. Leigh hopes that through the research and awareness provided by the Glut1 Foundation, that more families will have the opportunity for earlier recognition and diagnosis and access to proper treatment for the best possible outcome.
Glenna SteeleExecutive Director [email protected]
Glenna was a founding board member and first President of the Glut1 Deficiency Foundation. She has served as Executive Director of the G1DF since 2017 and also represents the Glut1 Deficiency community in a number of rare disease organizations and collaborations.
Glenna holds a BS and MEd in Education from Eastern Kentucky University and spent 15 years teaching public school kindergarten and first grade in Florida and Kentucky. She lives in Owingsville, Kentucky with her husband, John, and their daughters, Macie and Maggie. Macie was diagnosed with Glut1 Deficiency in 2008 at the age of 10. Rare Leader Spotlight
Sandra Ojeda, PhDScience Director [email protected]
Sandra holds a BS in Microbiology from Universidad de los Andes in Colombia, a MS in Biochemistry and Molecular Biology from Universitat Autonoma de Barcelona in Spain and a PhD in Microbiology and Immunology from UT Health Science Center in San Antonio. She has worked on cancer research at MD Anderson Cancer Center and more recently, she has taught science at a private school and worked at her daughter’s elementary school. Sandra and her family, husband Juan Manuel and daughter Sofia Mar, have lived in Katy, Texas since 2006. Sofia Mar was diagnosed with Glut1 Deficiency in 2012 at age 3 at Texas Children’s Hospital in Houston.
Maddison HallCommunications Coordinator [email protected]
Maddison is the Communications Coordinator for the Glut1 Deficiency Foundation. She is a mother and rare disorder advocate. She lives in Van Alstyne, Texas with her husband, Garrison, and their daughter, Eleanor. Maddison became involved with the Glut1 Deficiency Foundation when her daughter was diagnosed shortly before her 2nd birthday in 2021. She remains an active research participant in a search for answers as her daughter remains genetically undiagnosed. Maddison has a background in social media management and business development and she’s currently pursuing a degree in clinical psychology.
Natalie ChrismanDevelopment Coordinator [email protected]
Natalie holds a BA in Child and Family Studies from Eastern Kentucky University. She worked at Middle Tennessee State University as the Stewardship Coordinator for the office of Development and University Advancement before becoming a full-time mom and advocate for her three daughters who have Type 1 diabetes. Natalie resides in Louisville, Kentucky with her husband David, and their girls – identical twins Quinby and Stella and their little sister Ruthie.
Dana PottschmidtSocial Worker [email protected]
Dana Pottschmidt, MSW, LSW, RBC
Dana earned a Bachelors of Social Work from the University of Indianapolis and her Masters of Social Work from Indiana University. She has served various roles within direct support, employment services, and behavioral supports for those with intellectual and developmental disabilities. Dana is a Licensed Social Worker and a Registered Behavioral Consultant in the state of Indiana. She is currently working as a Behavioral Support Specialist at Opportunities for Positive Growth, Inc. where she works to increase independent living and social skills for those she supports. Dana hosts the Overcomers Zoom meetings for adults with Glut1 and also the Super Heroes for teens and pre-teens.
Katie StaudtBiorepository Director [email protected]
Katie holds a BA in Microbiology from Miami University and a MS in Molecular Biology from Wright State University. She has worked in Pulmonary Biology researching molecular and cellular mechanisms of lung host defense at Cincinnati Children’s Hospital Medical Center in Cincinnati, Ohio. She also has worked in Molecular Neuro-Oncology at Rockefeller University in NYC researching RNA regulation in autoimmunity, neurological disorders and cancer; specifically with Nova interactions in axonal guidance and brain development as well as RNA binding proteins in Fragile X in autism spectrum disorders. She is the PTA Special Education chair for Chappaqua Schools in Chappaqua, NY where she lives with her husband Preston and their children Liam and Lyla. Lyla was diagnosed with Glut1 Deficiency in 2016 at almost 6 years of age.
Trudy MorganEuropean Outreach Director [email protected]
Trudy is a PA and has been involved with the Glut1 Deficiency Foundation in a variety of roles. She is currently serving as volunteer Outreach Director in Europe and providing information, resources, and support on Glut1 Deficiency and the ketogenic diet to European families and healthcare professionals. Trudy is one of the founding trustees of Glut1 Deficiency UK and serves as its first chair. She lives in Cwmbran, South Wales in the United Kingdom. Her daughter Cleo was diagnosed with Glut1 Deficiency in 2002 at the age of 7.
Chantal SanchezSpecial Projects [email protected]
Chantal Sanchez is in charge of Special Projects for the Glut1 Deficiency Foundation. She assists with patient communications, patient and family engagements, research projects, and is very involved with the Glut1 Hispanic community. She holds a BA in Biology from Columbia University where she worked with Kris Engelstad and Dr. Darryl De Vivo. Chantal currently works in pediatric clinical research at Columbia University Irving Medical Center.
Kim MeinbergOperations Coordinator [email protected]
Kim lives in Murrieta, California with her sons Alex and Dylan. She has worked as an office manager for the past 17 years and brings that knowledge and experience to the Glut1 Foundation as the Operations Coordinator. She attended her first conference in New Orleans in 2011 after Dylan was diagnosed in November 2010 at the age of 7. Now that the kids are young adults and after losing her husband last year, Kim is ready to focus her energy on the foundation and furthering its cause.
Past Board Members
Lloyd Holleman 2011-2014 founding member
Keri Meyers 2011-2014 founding member
Jen Lazar 2011-2017 founding member
Greg Stoddard 2011-2017 founding member
Glenna Steele 2011-2017 founding member
Janet Parkhurst 2014-2017
Sandra Ojeda 2020-2021
April York 2017-2023
Jason Meyers 2014-2023
April Breen 2014-2023