Leadership Team
The Glut1 Deficiency Foundation is a nonprofit family organization dedicated to improving the lives of those in the Glut1 Deficiency community through increased awareness, improved education, advocacy for patients and families, and support and funding for research.
The G1DF is organized and led by parents. Many individuals and families make the work of the Foundation possible through the support they provide in many forms – thank you!
The G1DF is organized and led by parents. Many individuals and families make the work of the Foundation possible through the support they provide in many forms – thank you!
Executive Director
|
Glenna Steele
gsteele@G1DFoundation.org Glenna holds a BS and MED in Education from Eastern Kentucky University. She has spent 15 years teaching public school kindergarten and first grade in Florida and Kentucky. She has been a volunteer with the Epilepsy Foundation of Kentuckiana and Kentucky Special Olympics. Glenna was a founding board member, first President, and first Education Director of the Glut1 Deficiency Foundation. 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 |
Board of Directors
|
President – Jason Meyers jmeyers@G1DFoundation.org Jason is a registered professional engineer and holds a degree in Mechanical Engineering. He has been employed with the Louisiana Department of Environmental Quality for 20 years. He lives in Denham Springs, Louisiana with his wife, Keri, two sons, Cote and Scott, and daughter, Katie. Katie was diagnosed with Glut1 Deficiency in 2008 at the age of 4. |
|
Vice President – April York ayork@G1DFfoundation.org April earned her Doctor of Veterinary Medicine degree from Oklahoma State University. She’s been practicing small animal medicine for more than 20 years. April lives in Oktaha, Oklahoma with her husband, Allen, and their two daughters, Ashton and Abby. Abby was diagnosed with Glut1 Deficiency at 6 years of age in 2012. |
|
Secretary – Rob Rapaport
rrapaport@G1DFoundation.org 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. |
|
Treasurer – Debbie Stodard
dstoddard@G1DFoundation.org 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. |
|
Advocacy Director – Erin Meisner emeisner@G1DFoundation.org 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. |
|
Communications Director – Kelly Jones kjones@G1DFoundation.org 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. |
|
Education Director – Maria Rebbecchi
mrebbecchi@G1DFoundation.org Maria Rebbecchi is a registered nurse with a Bachelor’s of Science in nursing. She has worked in the emergency room and more recently urgent care over the last 15 years. She lives in Pine Hill, New Jersey with her husband, Tom, her daughter, Iris, and her son, Dominic, who has Glut1 Deficiency. Dominic was diagnosed in 2013, at the age of 3, at the Children’s Hospital of Philadelphia. Motivated by her son’s challenges and diagnosis, Maria quickly became involved involved with the G1DF and was driven to help others who had gone through what she had experienced. Maria’s passion is to help advocate for earlier diagnosis, spread awareness of Glut1 Deficiency, and support Glut1 families in need. |
|
Fundraising Director – April Breen
abreen@G1DFoundation.org April holds a BA in Environmental Studies from The University at Buffalo. She is a Public Health Specialist at the New York State Department of Health conducting surveillance on Muscular Dystrophy and supports public health activities relating to disease outbreaks within western New York. She lives in Cambria, New York with her husband, Gary, and daughter, Tessa. Tessa was diagnosed with Glut1 Deficiency in 2010 at the age of 9. Gary and April had their first “Fun Raiser” in support of the G1D Foundation within 3 months of Tessa’s diagnosis and have followed that with five more successful events. April became a member of the Fundraising Committee in 2013 and is very enthusiastic about continuing to support the Foundation’s mission of awareness, education and research. |
|
Science Director - Sandra Ojeda
sojeda@g1Dfoundation.org 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. Currently, she is focused on her daughter’s well being while working at her school. Sandra and her family, husband Juan Manuel and daughter Sofia Mar, reside in Katy, Texas since 2006. Sofia Mar was diagnosed with Glut1 Deficiency in 2012 at age 3 at Texas Children’s Hospital in Houston. |
European Outreach Director
|
European Outreach Director - Trudy Morgan tmorgan@G1DFoundation.org 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 lives in Cwmbran, South Wales in the United Kingdom. Her daughter Cleo was diagnosed with Glut1 Deficiency in 2002 at the age of 7. |
Educational Intern
|
Educational Intern - Chantal Sanchez
cmsanchez@G1DFoundation.org Chantal Sanchez was introduced to Glut1 Deficiency when she was a pre-med student at Columbia University and worked with Kris Engelstad and Dr. Darryl De Vivo. Currently, Chantal is working as a basic scientific researcher in a lab in her hometown of Miami, Florida. She has worked in a volunteer capacity with the Glut1 Deficiency Foundation for the last several months and has assisted with a number of educational projects, including our 2019 Washington, DC conference and the Conference Summary Report. In her role as an intern, Chantal assists with social media communications, patient and family engagement, and continues to help with a number of educational projects. |
Rare As One Network
|
We're honored to be part of the Chan Zuckerberg Initiative's Rare As One Network — a group of 30 patient-led organizations that are accelerating research and driving progress in the fight against rare diseases. The Chan Zuckerberg Initiative's Rare As One Project aims to support and lift up the work that patient communities are doing and will create a collaborative framework where these communities can work together, learn from one another, and help create models to scale and share to better address the most pressing needs across a spectrum of rare diseases. |
The Glut1 Deficiency Foundation’s participation in the Rare As One Network will help us establish a collaborative research network to lead to better engagement of patients, clinicians, and researchers, and will help provide the insights, tools, and knowledge needed to identify gaps, set meaningful and impactful goals, and prioritize resources to lead to better treatments.
Join our Family or Professional Network to get involved!
Join our Family or Professional Network to get involved!
Past Board Members
Lloyd Holleman (founding member)
Jen Lazar (founding member)
Keri Meyers (founding member)
Janet Parkhurst
Greg Stoddard (founding member)
Jen Lazar (founding member)
Keri Meyers (founding member)
Janet Parkhurst
Greg Stoddard (founding member)
