Family Conference

Friday, June 28 and
Saturday, June 29

8:30 AM CT to 4:00 PM CT

United Leukodystrophy Foundation

Educate. Collaborate. Advocate.

The ULF Annual Family Conference is a platform for education, collaboration, and advocacy. Families affected by leukodystrophy, who attend the conference, have access to the world’s most respected and knowledgeable leukodystrophy experts. The ULF welcomes collaborating patient advocacy organizations to present the latest information related to type-specific leukodystrophies and coupled with the general education sessions, the conference will provide a well-rounded educational experience aimed to empower affected families.

Affected people, parents and caregivers, siblings, extended family, friends, care team members, advocacy representatives of all types are welcome and encouraged to attend.

Our Annual Conference, born in 1981 with a handful of Board members who hosted family meetings, now includes the world’s most prominent leukodystrophy scientists, clinicians, and industry partners who come together to discuss their efforts and commitment to innovation, advancing science, and informing, empowering, and treating patients who are affected by leukodystrophies.

This year’s conference highlights include:

The Family Conference, where ULF will host affected families dealing with leukodystrophy from around the world, will be held both in person and virtually. This will include education sessions related to leukodystrophy science and workshops that empower families and caregivers. Dr. Geneviève Bernard of McGill University, and Chair of ULF’s Medical and Scientific Advisory Board, will provide a layperson’s summary of the Scientific Symposium sessions. This is to ensure that families are updated on advances in the field. Attendees include affected individuals, parents, caregivers, siblings, and extended family members who are part of the support network. The research and medical community are also encouraged to attend.

The Family Conference will also host our annual Patient Advocacy Group Mini-Symposium which will be incorporated throughout the two-day Family Conference. This will enable leukodystrophy-specific advocacy groups to benefit from ULF’s research community and industry partnerships to add value to the sessions focusing on their type-specific leukodystrophy.

2023 Conference Highlights

01

569 attendees from 37 states and 21 countries
145 virtual participants
14 Scientific Sessions
102 Speakers

02

14 Leukodystrophy Type-Specific Sessions
31 General Education Sessions
20 Support Group Sessions
108 Families in Attendance
30 Families Granted Full Scholarships

03

Held the Inaugural Dr. Paul J Watkins Excellence in Research Poster Presentation
Dr. Geneviève Bernard Awarded the 2023 Moser Service Award
Bob Rauner Honored as the 2023 Legacy Award Recipient

2024 Agenda

Friday, June 28 - Saturday June 29

Our Family Conference promises to be an engaging and meaningful weekend where our focus is on supporting our community with rich educational sessions, opportunities to collaborate, partnerships with our research clinicians and advocacy partners, and conducted in our usual warm, friendly, safe environment.

The ULF is happy to offer again this year, the Kids Room for children ages 5 and up. Parents can drop off their children with our volunteers from 8:30 am to 5:00 pm on Friday and Saturday for games, arts and crafts, bowling, movies, and fun. For questions about whether this is a match for your family member, contact [email protected]

We are pleased to announce our featured topics. A detailed agenda will be provided soon.

Features Speakers

Shannon S. Jennings
PsyD, LMHC

Scholarship Information

The ULF is dedicated to ensuring that families who want to join us at the Family Conference are able to regardless of financial hardship. In-person scholarships and scholarships for virtual attendance are available.