At this time, the 2020 ULF Conference has not been canceled.

The ULF is working with our Medical and Scientific Advisory Board (MSAB) to determine the best course of action for the 2020 ULF Conference.

The health and safety of the leukodystrophy community is our top priority as we consider all options for this year’s Conference. At this point, our MSAB is encouraging us to wait 2 – 3 weeks before making any decisions about postponing, cancelling or pursuing other options.
Here are the steps we are currently taking:
  • The Scientific Symposium and Family Conference has not been canceled as of Monday, March 23, 2020. We will be following the CDC’s and the State of Illinois’ guidelines and restrictions, as well as the recommendation of our MSAB, to navigate our options moving forward.
  • The opening of Conference registrations will begin Monday, April 20 so that we can monitor the virus’ development over the next four weeks.
  • If you have already booked your hotel room, please remember that you have until June 22 to cancel your room at no additional charge. We will remind you to cancel your room should it become necessary to do so.

We will update you as soon as any new decisions are made. Thank you for your continued support in the Foundation.

Save the Date! Our 2020 Conference will be held on June 25 – 27 at the Eaglewood Resort & Spa in Itasca, IL.

Registration for the 2020 Conference will open on April 6th.

Registration fees will be $25 per adult (18 and over), and $10 per child (17 and under).

The Annual Family Conference is an event for families to confer with medical professionals outside of the restrictions of insurance and hospitals. Families participate in educational seminars that are geared towards improving the quality of life for leukodystrophy patients and their caregivers.

About our Venue

Our 2020 conference will be held at the scenic Eaglewood Resort and Spa near Chicago, IL. Eaglewood is a unique Midwest destination that caters to spa goers, golfers, fun loving couples looking for a romantic getaway, and families seeking a nearby destination with exciting activities. This Midwest resort is highly inspired by nature, as well as the legendary work of Frank Lloyd Wright, who is known for his Prairie Path style architecture throughout the Chicagoland area.

Guests experience interior spaces that  capture the essence of its beautiful surroundings, with naturally lit meeting and guest rooms overlooking the remarkable 18-hole golf course.

Eaglewood Resort & Spa

1401 Nordic Road, Itasca, IL 60143

 The Eaglewood has a limited amount of single bed ADA rooms. For additional ADA rooms, including rooms with two beds, you can book at a nearby hotel and a complimentary shuttle will be available for you. Click here for additional hotel information.

Getting to the Conference


O’Hare International Airport, with direct flights from most major cities, is only 20 minutes away!  Over 50 airlines from around the globe serve O’Hare. **We HIGHLY recommend flying into O’Hare, as it is much closer to the Eagelwood than Midway, especially for individuals/families who need wheelchair accessible taxis. See the taxi information below!**

Midway Airport located south and west of Chicago is approximately 1 hour from the hotel via major highways.


Taxis From O’Hare Airport
If you plan to take a taxicab to the northwest suburbs, please be sure to call one of the suburban taxi companies from the kiosks at the baggage claim levelDo not get into the city taxi cab line as it will cost you    1½ times more than a suburban taxicab. City taxicabs are in the first lane, closest to the curb. Suburban taxis will pick you up at the second island outside of baggage claim, but they need to be called.  We recommend the following taxicab companies: 303 Taxi Service (Phone: 847-303-0303) and American Taxi (Phone: 847-673-1000). Other transportation options to/from O’Hare include Uber, Lyft and a variety of ride share companies.

Taxis From Midway Airport
Midway is located south and west of Chicago is approximately 1 hour from the hotel via major highways. Transportation options to/from Midway include taxicab, Uber, Lyft, Chicago Airport Express, and a variety of Rental Car & Limousine companies.  City Taxicabs are in the first lane closest to the curb.

Wheelchair Accessible Taxis
The City of Chicago is committed to providing efficient taxicab service to those individuals requiring a wheelchair accessible taxicab. Whether you need an immediate pickup or to schedule a ride in advance, you can contact Open Taxis 24/7 by calling their toll-free phone number at 1-855-WAV-1010 or 1-855-928-1010. Visit Open Taxi’s Web site at to explore all the options available to request a Wheelchair Accessible Taxicab, including text, email and mobile phone applications. A definite cost estimate is not possible as fares will vary depending on time of day, but please keep in mind that a one-way ride with Open Taxis could cost a much as $80 or more from O’Hare if traffic is heavy. This is why we HIGHLY suggest flying into O’Hare, as Midway’s Taxi cost could be over $150 one way.


Parking at the Eaglewood is open-air and free!

Youth Programming

Teen Program: Teens who are aged 13+ will have the option to participate in sessions that are age-appropriate and more relevant to their demographic.

Kids Room: The Kids Room is for children Kindergarten age to 12 years old. Volunteers of the Kids Room are education professionals who organize activities that encourage social interaction and skill building.

The Kids Room is not equipped or staffed for children younger than Kindergarten. Volunteers will not change diapers, or assist children with going to the bathroom. The Kids Room and Teen Program are for affected and unaffected participants.

Auction Donations

We ask our conference attendees to consider bringing an item or two (or four!) to include in our auction, which helps us offset some of the costs related to hosting the conference.

We encourage that these items be representative of where you are from – especially if you are traveling internationally!

Any donation is welcome and appreciated, and will be acknowledged so that your gift can be recognized as a tax-deductible donation to the extent of the law. If you are planning on bringing a  auction item, please give us a heads up! There will be a table in the Registration Area to drop off your item at the event. Please make sure to fill out the donation form so that we can properly acknowledge your generous donation!

Thank you to our 2019 Sponsors!