Are you newly diagnosed?

Learn More

Virtual Access: Family Conference

The 2024 Family Conference Begins on friday, June 28.

Please be advised that this page is for FRIDAY, JUNE 28th Virtual links. All session times are in CENTRAL STANDARD TIME.

CENTRAL STANDARD TIME	Red Oak Ballroom
08:30 – 08:45 AM	Welcome & Introduction! Dr. Joseph Hacia and Dr. Walter Koroshetz SESSION ROOM LINK
Room	Red Oak Ballroom	Bluestem	Hazelnut	Hollyhock	Iris
09:00 – 10:00 AM	Zebrafish, Mice, and More: Research Strategies for LeukodystrophiesDr. Josh Bonkowsky, Utah Health SESSION ROOM LINK	Leukodystrophy 101 Dr. Ali Fatemi, Johns Hopkins and Kennedy Krieger Institute SESSION ROOM LINK	Gene Therapy for MLD Updates, Life After Diagnosis: Building Resilience as a Family, and Standards of Care UpdateOrchard, Asmahan Safi and Cure MLD SESSION ROOM LINK	ALSP Presented by the ULF Click here for agenda SESSION ROOM LINK	MLC Presented by Alliance MLC Click here for agenda SESSION ROOM LINK
10:15 – 11:15 AM	Unlocking Your Family History and Decoding Genetic Inheritance Rachel Hickey, Genetic Counselor SESSION ROOM LINK	What to Expect? Anticipatory Guidance for Parents of Affected Children Lindsey Topping Schuetz, Courageous Parents Network SESSION ROOM LINK	State-by-State Plan for Introducing and Implementing Screening for MLD by 2029 Cure MLD and Lesa Brackbill,Leukodystrophy Newborn Screening Action Network SESSION ROOM LINK
11:30 – 12:30 PM	Rehabilitation for Adults Dr. Kathy Zackowski and Jennifer Keller, Kennedy Krieger Institute SESSION ROOM LINK	Forecasting Interventions for Pediatric Patients Dr. Stephanie Keller, Emory University SESSION ROOM LINK	Supporting the Siblings: Managing a New Normal and Caring for the Unaffected Sibling Sarah Stoney, CHOP, and Loren Mirsky-Piatkin, Breakthrough Coaching Center SESSION ROOM LINK
12:30 – 01:30 PM	Lunch

CENTRAL STANDARD TIME	Red Oak Ballroom	Bluestem	Hazelnut	Hollyhock	Iris
01:30 – 02:30 PM	LCC, Labrune SyndromeDr. Jamie Fraser, Children’s National Hospital SESSION ROOM LINK	Mental Health for Parents of Affected Children: Processing a New Diagnosis Sarah Stoney, CHOP, and Soo Shim, Lurie Children’s Hospital SESSION ROOM LINK	CTX Presented by CTX Alliance Click here for agenda SESSION ROOM LINK	ALD/AMN Presented by the ULF Click here for agenda SESSION ROOM LINK	VWM Presented by VWM Families Foundation Click here for agenda SESSION ROOM LINK
02:45 – 03:45 PM	Managing Caregiver Burnout Marla Chapleau, MLC Mom Caregiver SESSION ROOM LINK	Mental Health for Affected Adults: Processing a New Diagnosis Sarah Stoney, CHOP, and Soo Shim, Lurie Children’s Hospital SESSION ROOM LINK
04:00 – 05:00 PM	Choosing Medical EquipmentDr. Kathy Zackowski and Jennifer Keller, Kennedy Krieger Institute SESSION ROOM LINK	Making the Most of Your Wish: Make a Wish Alumni Panel Dina Thachet, Make-a-Wish IL and Wish Alumni SESSION ROOM LINK