session 1ADULT PATIENT EXPERIENCES AND SUPPORT:
Introduction: Mackenzie Cervenka, MD Johns Hopkins Hospital - Baltimore, Maryland USA ------- Family Story: Breen Family ------- Transition from pediatric to adult neurologic care: Elizabeth Felton, MD, PhD University of Wisconsin - Madison, Wisconsin ------- Accessing services for adults with intellectual and developmental disabilities: Dana Pottschmidt, MSW, LSW, RBC ------- Long-term management of ketogenic diet therapies in adults with Glut1DS: Tanya McDonald, MD, PhD Johns Hopkins Hospital - Baltimore, Maryland USA ------- Open discussion/Q&A |
session 2KETOGENIC KIDS - 2022 UPDATE AND Q&A SESSION:
Ketogenic Diet Overview: Eric Kossoff, MD Johns Hopkins Hospital - Baltimore, Maryland USA ------- Best Practices in Ketogenic Diets and Glut1 Deficiency: Stacey Bessone, RDN, LDN Johns Hopkins All Children’s Hospital - St. Petersburg, Florida USA ------- Open discussion/Q&A |
session 1STRETCHING THE SUPPORT:
OT, PT, speech, cognitive insights and strategies Speakers: Cognitive Insights: Ana Hernandez, MS, CBIS Occupational Therapy: Erin Meisner, OT Speech Therapy: Catherine Dabasinskas, MA, CCC-SLP Physical Therapy: Jennifer Blazer, PT and Hannah Walter, PT |
session 2KETOGENIC DIET ALTERNATIVES:
family perspectives and experiences Speakers: Community overview and precision medicine: Glenna Steele Diazoxide: Chris Shelsta C7 oil (triheptanoin): Mike Proett "open mic" - other experiences from audience |
session 1FUTURE PLANNING:
independence, waivers, disability, trusts, ABLE, ARC Speakers: Disability, Medicaid, and Waivers: Glenna Steele Special Needs Trusts: James Davis Resources and support: The Arc of San Diego Gifting a good life: advice from parents Jim and Pat Hemlock Beverly Wray Q&A |
session 2LIFE HACKS: Parent to Parent
tips and strategies to make life easier Speakers: Life with feeding tubes - Kelly Jones Kitchen keto tips - Dawn Martenz Surviving rare disease parenthood - Vivian Mathis Life with a service dog - Keri Meyers Preparing for emergencies - Maria Rebbecchi "open mic" - favorite tips from the audience Q&A |
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