Yaya Foundation @ ULF Conference

Yaya Foundation in Partnership with ULF Conference

June 25, 2022

Join us at the Eaglewood Resort and Spa , Chicago, Illinois.  Sessions are available in-person and virtually. Yaya Foundation is honored to sponsor registration fees for 4H families. Use the code yaya4h at checkout.

About The Conference

The Yaya Foundation is proud to be a sponsor of the ULF Conference, as well as to provide a 4HL specific agenda for this event. The ULF Family Conference is an annual event where affected families can access the world’s top leukodystrophy physicians and researchers – outside of the restrictions of insurance and the hospital setting. Held over two days, the Conference aims to provide the latest scientific information to keep families informed on advances in the field but also guide families on topics that will improve their overall quality of life while living with a leukodystrophy. The Conference is an invaluable experience geared toward the whole family: Affected individuals, parents and caregivers, spouses, siblings, extended family, friends, and anyone else in their support network.

Registration covers entry to the event whether virtual or in-person. For in-person attendees, the eight meals provided at the venue are also included in registration. Attendees are responsible for securing their hotel room(s) and making their own travel arrangements. Scholarships are available to families who are newly diagnosed or are in financial need.


4H Leukodystrophy-Specific Agenda

9:00 AM – 9:10 AM
Introduction: The Yaya Foundation’s Vision
Ron Garber
Research Focus of the Yaya Foundation:
9:10 AM – 9:40 AM
Data Collection
Christina Butterworth
9:40 AM – 10:10 AM
Natural History
Dr. Nicole Wolf
10:10 AM – 10:40 AM
Animal Models
Dr. Ian Willis
10:40 AM – 11:10 AM
Gene Therapy Approach and Status
Dr. Jun Xie & Valerie Greger
11:10 AM – 11:30 AM
11:30 AM – 11:55 AM
Yaya Foundation Research: Vision, Priorities, and Roadmap
Valerie Greger
11:55 AM – 12:25 PM
Yaya Foundation Family Programs, Support and Input
Christina Butterworth & Shannon Healey
12:25 PM – 12:30 PM
Christina Butterworth


Special Thank You To Our Sponsors!