June 28, 2025
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. A detailed agenda is forthcoming. Registration is all handled through ULF!
The Krabbe Family Warrior Meet-up at the ULF Conference
Date: Saturday, June 28, 2025
Time: 9:00 am – 12:30 pm CST
Location: Eaglewood Resort and Spa
Address: 1401 Nordic Rd, Itasca, IL 60143
Next Steps for the KrabbeConnect Meeting & ULF Family Conference
1. Register
Register here through ULF.
2. Book Hotel
Book Hotel (June 27-29) here. Book as soon as possible as the hotel will fill up fast!
3. Apply for Stipend
Apply here for the KrabbeConnect Stipend. Applications due May 30, 2025.
Approximate Costs
| Item | Fees | Early Bird Costs (Ends 03/31/24) |
|---|---|---|
| Adult Registration | $50 | $25 |
| Child Registration | $30 | $15 |
| Virtual Registration | $50 | Same |
| Hotel (1-2 people) | $155 / night ($139 + $31 tax) | Same |
| Hotel (2-4 people) | $169 / night ($152 + $17 tax) | Same |
| Uber/Lyft | $40 from airport to hotel | Same |
| Airfare | Depends on how early you book your flight. We suggest flying into O’Hare | Same |
| Fuel | Depends on how far you live from Eaglewood Resort and Spa | Same |
| Food | Your registration includes 3 meals on June 28th and 3 meals on June 29th | Same |
Financial Assistance for Conference
KrabbeConnect Scholarship is available. To apply, click here.
- Will reimburse registration fees
- Requests must be made in advance by sending an email to info@krabbeconnect.org by Friday, May 30, 2025. Please be sure to attach your ULF receipt for the registration fees.
- Applicants will receive their reimbursement following their attendance at the Krabbe Family Warrior Meet-Up on June 28, 2025; if you neglect to attend the meeting or do not attend at least 80% of the meeting, we will be unable to honor your application for reimbursement.
If you have any questions about the Scholarship, email us at info@krabbeconnect.org or call us at 1-800-800-5509.
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 Saff 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 26th
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 27th-29th, departure on June 30th
About: The ULF Family Conference is an annual event where affected families can access the world’s top 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 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.