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 patient advocacy organizations to present the latest information related to type-specific leukodystrophies. 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 will include education sessions related to leukodystrophy science and workshops that empower families and caregivers.
The Family Conference will also host our annual Patient Advocacy Group Mini-Symposiums 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.
Friday, June 26 - Saturday, June 27
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 connect with other families, our research clinicians, industry partners and patient advocacy groups.
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 Office@ULF.org
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on this year’s conference sessions and agenda!
Features Speakers
Shannon S. Jennings
PsyD, LMHC
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 for attendance are available.
More details and application coming soon!
Planning Committee
Margaret McIntyre
Donna Skwirut
Marilyn Schmeidel
Shannon Reed
Marcie Flores
Sponsorship Opportunities
Thank you to our 2025 Sponsors
Content Partners
