Hunter’s Hope Foundation
2022 Global Virtual Leukodystrophy Symposium DRAFT Program
Please note, this program is subject to change and will be finalized a week prior to the meeting.
*Families are welcome to attend all sessions.
Medical Symposium: Day One
Leukodystrophy Families Welcome
Tuesday, July 19, 2022 – 1:00pm – 5:00pm ET
Newborn Screening (NBS) for Leukodystrophies
1:00pm ET — Welcome and Overview, Presented by: Anna Grantham
1:10 – 2:10pm ET — Leukodystrophy NBS State Updates, Moderated by: Joseph Orsini, PhD
2:10 – 2:30pm ET — NBS for Krabbe Disease (KD) – Updates and Improvements Presented by: Dietrich Matern, MD, PhD
2:30 – 2:45pm ET — KD NBS Advisory Council, Presented by: Joanne Kurtzberg, MD
2:45 – 3:00pm ET — KD NBS Family Guide, Presented by: Robert Thompson Stone, MD
3:00 – 3:15pm ET — Patient Experiences, KD NBS
3:15 – 3:30pm ET — Improving KD NBS Patient Experiences and Outcomes,
Presented by: Joanne Kurtzberg, MD
3:30 – 3:45pm ET — KD NBS Outcomes – Standardizing Nerve Conduction
3:45 – 4:00pm ET — Biochemical NBS meets DNA Sequencing NBS: It is not one or the other, Presented by: Michael Gelb, PhD
4:00 – 4:15pm ET — ALD NBS Overview/Update
4:15 – 4:30pm ET — MLD NBS Overview/Update, Presented by: Michael Gelb, PhD
4:30 – 4:45pm ET — CTX NBS Overview/Update, Andrea DeBarber, PhD
4:45 – 5:00pm ET — Discussion
Medical Symposium: Day Two
Leukodystrophy Families Welcome
Wednesday, July 20, 2022 – 1:00pm – 5:00pm ET
Leukodystrophy Clinical Care and Treatments
1:00pm ET — Welcome and Overview, Presented by: Anna Grantham
1:05 – 1:20pm ET — Leukodystrophy Care Network Overview
1:20 – 3:15pm ET — Industry Updates: Leukodystrophy Clinical Trials and Research
3:15 – 3:35pm ET — DUOC: A Cord Blood Therapy to Myelinate the Brain,
Presented by: Joanne Kurtzberg, MD
3:35 – 3:50pm ET — Early Signs and Symptoms of Leukodystrophies: A Case Based Guide, Presented by: Maura Ruzhnikov, MD, FACMG
3:50 – 4:05pm ET — A Systematic Evidence Review for Cerebrotendinous Xanthomatosis: Phenotypic Spectrum of Disease and Response to Therapy, Presented by: Austin Larson, MD
4:05 – 4:20pm ET — Update on Rehabilitation for Children with Leukodystrophies,
Presented by: Sally Evans, MD
4:20 – 4:35pm ET — Respiratory Clinical Practice Guidelines for Leukodystrophies, Presented by: Geovanny Perez, MD
4:35 – 4:50pm ET — Clinical Care for Patients with Cerebrotendinous Xanthomatosis, Presented by: Brian Wishart, MD
4:50 – 5:00pm ET — Discussion
Family Symposium: Day One
Wednesday, July 20, 2022 – 7:00pm ET
Family Introductions
Each registered family in attendance will have a chance to introduce themselves and share their story.
*All are welcome to attend.
Family Symposium: Day Two
Thursday, July 21, 2022 – 6:00pm – 7:30pm ET
LCN/NBS Advocacy & Family Programs
6:00 – 6:30pm ET — LCN & NBS Updates/Advocacy, Presented by: Anna Grantham
6:30 – 7:00pm ET — Family Programs/Resources, Presented by: Melissa Jablonski
7:00 – 7:30pm ET — Discussion
Family Symposium: Day Three
Friday, July 22, 2022 – 9:00am – 12:30pm ET
A Day of Hope & Inspiration for Families
9:00 – 10:00am ET — The Heart of the Caregiver, Presented by: Mary Tutterow
10:00 – 11:00am ET — Imagine Heaven, Presented by: John Burke
11:00 – 11:20am ET — RightNow Media, Presented by: Conzie Wells
11:20 – 11:40am ET — Pure Flix, Presented by: Pure Flix
11:40 – 12:00pm ET — Light your Heart with Hope Podcast, Presented by: Jacque Waggoner
12:00pm – 12:30pm ET — Story Time with Jill, Presented by: Jill Kelly
Men & Women Sessions
2:00 – 4:00pm ET