2022 Family Conference

Join us at the Eaglewood Resort and Spa on Friday and Saturday, June 24th and 25th!

It’s official – the ULF Family Conference is back in-person! We are thrilled to be hosting at the Eaglewood Resort and Spa again this year, and we cannot wait to see you! Registration is now open! We will post updates on this page as we continue to finalize information about this year’s event, so please check back regularly!

Please note: Covid-19 vaccination is required to attend the in-person meeting, and masks are to be worn at all times. Please read more about our Health & Safety Measures below. Selected sessions will be available via Virtual Access live-streaming and recording – see more information below.

Agendas are Subject to Change

Thank you to our presenting and sponsoring content partners!

CTX Alliance, Cure MLD, The Calliope Joy Foundation, Elise’s Corner, Krabbe Connect, and the Yaya Foundation

FYIs and FAQs:
— Arrive at the Eaglewood on Thursday, June 23rd and depart on Sunday, June 26th.
— Welcome Dinner for all Family Conference attendees at 6:30 PM on Thursday, June 23rd.
— Family Conference sessions begin on Friday at 9 AM.
Tribute Gala honoring Ann Moser will be hosted on Friday, June 24th. Separate ticket required, discounted for Family Conference attendees. Virtual participation options available.
Reserve your room with our room block for $132/night. Call (630) 773-1400 to reserve by phone and mention the ULF Room Block!
— Flying? We recommend O’Hare International which is closest to the hotel. Midway Airport is a ~$200 taxi fare one-way.
— Driving? Free open-air parking available.
— Registration fees: $25/adult, $10/child aged 17 and under.
— Kids Room for children aged 5+ is available and included in registration, see more details below.
— Registration includes 8 meals: dinner on Thursday, breakfast, lunch and dinner on Friday and Saturday, and breakfast on Sunday.
— Dietary restrictions are collected during the registration process. If you require a kosher meal, please reach out to office@ulf.org as an additional fee applies.
— Proof of COVID-19 vaccination will be collected prior to arrival at the hotel. Please bring a face mask (surgical grade or higher). See Health & Safety Measures below.
— Scholarships may be available! Apply for our Wait List today, applicants will be notified if more funds become available. Click here for more information.
— Pre-Conference Webinar: “What to expect at the 2022 ULF Family Conference” Wednesday, May 25th, 7 PM Central. Register here.

Health and Safety Measures

Click here to view the complete Health & Safety Measures for this year’s in-person events.

In order to protect the health and safety of our community, COVID-19 vaccination will be required to attend the in-person meetings and Gala. We are following the guidance of our Medical and Scientific Advisory Board, and the CDC‘s guidelines. Proof of vaccination will be submitted to the ULF prior to arrival at the hotel, and any walk-in attendees will need to present proof of vaccination before attending any sessions. The ULF will also require surgical grade or above masks (N95 or KN94) be worn at all times. Please bring your own mask to the event. Questions or concerns regarding these precautions can be directed to office@ulf.org, or by calling the office at 815-748-3211.

The Kids Room

The Kids Room will be available to children ages 5 and older. Proof of COVID-19 vaccination and face covering is required. The Kids Room is staffed by vaccinated volunteers who are licensed educators. Children are to be collected by their parents or caregivers for meal times. Staff will not administer medications or medical treatments, or assist children who need help using the restroom; if your child requires help for any of these things, you will be called. Please keep your cell phone on vibrate while attending sessions. If there are behavioral concerns by the staff, you will be called to collect your child. Children under the age of 5 will need to remain with their parents or caregivers while attending sessions, or should have another childcare option arranged.

Virtual Access

Selected Family Conference sessions will be streamed and recorded. Please refer to the agenda to see which sessions will have streaming or recording options available. Recordings will be available for viewing on the ULF Office YouTube Channel in early July.


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.

When held in person, the cost to attend is $25 per adult and $10 per child under the age of 18. This fee covers entry to the event, as well as eight meals provided at the venue. The 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.

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