June 27, 2026
This family meet-up will feature Krabbe-specific scientific, advocacy, and family support sessions. This meeting is designed to empower patients and their families by providing information and tools to help navigate Krabbe disease. KrabbeConnect wants you to use this time to connect and learn from others walking in your shoes, hear from the medical and research community on recent updates, and get to know the companies supporting Krabbe disease.
The Krabbe Family Warrior Meet-up at the ULF Conference
Date: Saturday, June 27th, 2026
Time: 1:30 pm CST – 5:00 pm CST
Location: Hilton Chicago/Oak Brook Hills Resort & Conference Center
Address: 3500 Midwest Rd, Oak Brook, IL 60523
Next Steps for the KrabbeConnect Meeting & ULF Family Conference
1. Register
Registration happens through the United LeukodystrophyThe leukodystrophies comprise a group of progressive, genetic disorders mainly affecting the central nervous system (CNS). Most leukodystophies result from a disruption of the growth of the myelin sh Foundation here.
- Adult – Family Conference – select number of adults attending
- Children and Youth (under age 18) – select number of children attending
2. Book Hotel
Once you register, you will be directed to the link for the hotel.
Hotel – Hilton Chicago/Oak Brook Hills Resort and Conference Center at 3500 Midwest Road, Oak Brook, IL 60523
3. Apply for Financial Assistance
Financial Assistance through KrabbeConnect – Complete this confidential form by Monday, April 20th, 2026
Approximate Costs
| Item | Fees |
|---|---|
| Adult Registration | $125 |
| Child Registration | $40 |
| Virtual Registration | $40 |
| Hotel (King Bed) | $183.95/night ($14.95 hotel fees) |
| Hotel (2 Queen Beds) | $183.95/night ($14.95 hotel fees) |
| Uber/Lyft | $40 from airport to hotel (approx.) |
| Airfare | Depends on how early you book your flight. We suggest flying into O’Hare |
| Fuel | We suggest using this free fuel calculator (https://www.calculator.net/fuel-cost-calculator.html) |
| Food | Welcome Reception and Dinner on Thursday evening. All meals are provided on Friday and Saturday, including breakfast, lunch, and dinner. Sunday, you are on your own. |
| Scenario | Registration Cost | Hotel (3 nights) | Subtotal (Hotel + Reg) | + Uber (RT est.) | Estimated Total |
|---|---|---|---|---|---|
| 1 Adult + 1 Child | $165 | $596.70 | $761.70 | $80 | $841.70 |
| 2 Adults + 1 Child | $290 | $596.70 | $886.70 | $80 | $966.70 |
| 2 Adults + 2 Children | $330 | $596.70 | $926.70 | $80 | $1,006.70 |
Financial Assistance for Conference
KrabbeConnect Scholarship
KrabbeConnect is committed to helping families attend this in-person meeting. We recognize that conference registration and hotel costs have increased from last year, and we are doing our very best to accommodate as many families as possible with the resources available. We are happy to offer financial assistance to families in need. To ensure fairness and transparency, the following stipend protocol will guide all awards.
Eligibility
Families may be eligible for a KrabbeConnect stipend if:
- They plan to attend the meeting in person
- They demonstrate financial need
- They did not receive a scholarship from the United Leukodystrophy Foundation (ULF)
Because our funding is limited, we will give priority to families who are caring for a child with Krabbe disease and to those traveling the farthest. To help us use our funds wisely and support as many families as possible, stipend checks will be given after you attend the KrabbeConnect meeting. This process simply helps us responsibly steward our funds in the event your family encounters an illness, travel problems, or other unexpected situations preventing you from attending.
KrabbeConnect Scholarship Form – Start Now! Fill out this Google Form to apply: https://docs.google.com/forms/d/e/1FAIpQLSdn3JmM3ggIfeRZ9wr8nkyBjWuTFT0Ak3hJ2PJ97drD_ns-fw/viewform?usp=header
Stipend Award Chart
| Household Attending | Driving Stipend | Flying Stipend |
|---|---|---|
| 1 Adult + 1 Child | $400 | $750 |
| 2 Adults + 1 Child | $450 | $850 |
| 2 Adults + 2 Children | $500 | $1000 |
Why Attend?
- Knowledge is power! Knowing the latest insights and information on Krabbe disease can help you make informed decisions that are right for you and/or your loved one(s).
- Childcare is provided! ULF will provide Kids Camp for any registered child. Kids Camp is staffed with licensed special educators. This allows both parents to attend the conference. Please note: Kids Camp Staff are not able to give medicine or assist in toileting. Should a Kids Camp Staff need you for these tasks, they will simply send you a text. You will also need to pick up your children for lunch. This allows the Kids Camp Staff to have a break.
- Network with others walking in your shoes! This is your time to take advantage of connecting with others, build relationships, and learn what works for others navigating Krabbe disease.
- Hope and inspiration! Being surrounded by others actively working to change the outcomes of a rare condition can reenergize and uplift you.
Additional Information on ULF Family Conference:
ULF Scientific Symposium: Thursday June 25th
Please note: The Scientific Symposium is a meeting for research, medical, and industry professionals. The one-day meeting takes place on the day before the Family Conference and allows physicians, researchers, and more to share projects, discuss ideas, and network in a professional setting. You can find additional information here.
United Leukodystrophy Family Conference
Dates: June 26th-27th, departure on June 28th
About: 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. You can find additional information here.