Overview: Adults with intellectual and developmental disabilities (IDD) are at high risk for poor diet quality. Furthermore, in adults with IDD as a result of certain underlying metabolic conditions, dietary management can have a profound impact on their neurologic function and quality of life. Positions and Findings: Macie Steele was diagnosed with glucose transporter type 1 deficiency syndrome as a child and Johns Hopkins Neurology Resident Anna Patnaik, MD will begin the Webinar by presenting her medical history, diagnosis, and nutritional management strategies. Macie and her mother Glenna Steele, Executive Director of the Glut 1 Deficiency Foundation, will share their perspectives as patient and advocate on the importance of individualized nutritional management in health and disease.
Finally, Janice Goldschmidt, MPH, MS, RD, LDN will discuss the nutritional and general health status of adults with IDD and strategies to address the nutritional and health needs of those with IDD with an overview of these disparate approaches. Conclusions: Best medical practice incorporates the individualized nutritional needs of adults with intellectual and developmental disabilities.
Macie Steele is 25 years old and was diagnosed with Glut1 Deficiency (glucose transporter type 1 deficiency syndrome) at 10 years of age. She lives in Owingsville, Kentucky with her parents, her sister, and her beloved pets. Macie volunteers regularly in a second grade classroom at Mapleton Elementary School and enjoys music, camping, and going to the lake with her family.
Glenna Steele was a founding board member and is currently the Executive Director of the Glut1 Deficiency Foundation. She holds a BS and MEd in Education from Eastern Kentucky University. She 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 and currently lives in Owingsville, Kentucky with her husband, John, and their daughters, Macie and Maggie.
Janice Goldschmidt, MPH, MS, RD, LDN received her Master's Degree in Nutrition and Food Science as well as a Master's in Public Health from the University of Maryland-College Park. She is actively involved as both a researcher and practitioner in the nutritional status of individuals with autism and other developmental disabilities and has published and presented on this topic in numerous professional publications and conferences. In 2018, the American Association on Intellectual and Developmental Disabilities (AAIDD) published her first book entitled Teaching Authentic Cooking Skills to Adults with Intellectual and Developmental Disabilities: Active Engagement. Janice is currently serving as the Director of Nutrition Services at Community Support Services, Inc. (Gaithersburg, MD) where she is responsible for development of programs intended to support the health and wellness of adults with autism through nutrition related programming.
Anna Patnaik is a third year neurology resident at The Johns Hopkins Hospital. She received her undergraduate degrees in psychology and biology at the University of Maryland, College Park and she attended medical school at the University of Maryland. She plans to pursue a fellowship in epilepsy.
Dr. Mackenzie Cervenka is a Professor of Neurology at Johns Hopkins School of Medicine with subspecialty training in epilepsy. Dr. Cervenka is Medical Director of the Johns Hopkins Adult Epilepsy Diet Center and the Adult Epilepsy Monitoring Unit. She developed the Johns Hopkins Adult Epilepsy Diet Center in 2010 and has treated nearly 450 adults with epilepsy using nutritional approaches such as ketogenic diet therapies. She conducts clinical trials examining the feasibility, safety and efficacy of ketogenic diet therapies in managing medically resistant epilepsy and refractory status epilepticus, and also collaborates with investigators to evaluate these treatments for patients with alcohol withdrawal, glioma, Parkinson's disease, migraine, and dementia.
Time: 10 am MST
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