Family Conference

Family conference june 26-27, 2026

NEW LOCATION

Hilton Chicago/Oak Brook Hills Resort & Conference Center 3500 Midwest Road, Oak Brook, Illinois, 60523 USA

important announcement for this year's family conference

We plan to offer testing with long-read Whole Genome Sequencing (LR-WGS) for attendees who have been diagnosed with leukodystrophy but not diagnosed with a specific gene variant.

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.

EXCLUSIVE BOOK SIGNING EVENT AT THIS YEARS CONFERENCE

We’re honored to welcome Dr. Josh Bonkowsky, a distinguished pediatric neurologist and author, who will be joining us onsite as a speaker at the Family Conference as well as for a reception and exclusive signing of his new book “Dancing Eyes Dancing Feet: On the Frontline of the Revolution in Children’s Medicine “.

Conference attendees will have the unique opportunity to purchase his newly released book at a significantly discounted rate available at the event.

Not able to attend? We’ll be sharing a limited-time promo code on June 26, so our broader community can also enjoy the book at a similarly reduced price.

Join us in celebrating the power of storytelling, learning, and connection.

About Dancing Eyes Dancing Feet: On the Frontline of the Revolution in Children’s Medicine

Josh Bonkowsky is a pediatric neurologist, and in his Utah clinic he treats children with mysterious and rare neurological illnesses, which can cause problems like devastating seizures.

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

Stay Connected!

Join our mailing list or follow us on social media for updates

on this year’s conference sessions and agenda!

Features Speakers

Shannon S. Jennings
PsyD, LMHC

Hotel Reservation details

Hilton Chicago/Oak Brook Hills Resort & Conference Center, 3500 Midwest Rd, Oak Brook, IL 60523

Upon registering for the event, you will receive an email confirmation with details for booking your hotel stay. The ULF room block is limited and on a first-come, first-served basis. We encourage you to register early and book your hotel as soon as possible! The last day to reserve your hotel if rooms are still available at that time is June 1, 2026.

Rooms & Rates

Price includes $14.95 USD resort charge per night, but excludes tax
1 King Bed – $183.95
2 Queen Beds – $183.95

We have a room block for King ADA rooms. If you require an ADA room, please contact Tara Nuñez at tara@ulf.org to check availability.

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!