Saturday, June 27, 9:00 am – 12:30 pm CDT

NEW Location: Hilton Chicago/Oak Brook Hills Resort & Conference Center, 3500 Midwest Road, Oakbrook, IL 60523

Come meet your CADASIL Community at the 2026 cureCADASIL Patient Investigator Meeting

This meeting will be held on June 27, the second day of the ULF Family Conference on with informative talks by leaders of cureCADASIL and CADASIL researchers. As part of our ongoing effort to promote Communication, Advocacy, Research, and Education, cureCADASIL will host a half-day Patient-Investigator Meeting held in conjunction with the United Leukodystrophy Foundation (ULF) Scientific Symposium and Family Conference.

We invite CADASIL patients, families, friends, and caregivers to join us to learn about the recent progress being made toward CADASIL therapeutics, and updates on the research studies actively recruiting volunteers that will help get us there. There will be opportunities to talk with our clinicians and researchers, and we encourage everyone to ask questions about CADASIL and the progress toward therapeutics in a welcoming, informal setting. Register to attend virtually or in-person, click here.

Schedule of Events

Time Event
9:00-9:10 am Welcome-Bert Kasiske, cureCADASIL 2026 President
9:10-9:40 am Chan Zuckerberg Initiative Results & Future Directions presented by Lighwa Ncube Clinical Research Manager & Nikolas Karvelas Postdoctoral Fellow, Elahi Lab Icahn School of Medicine at Mt. Sinai
9:40-10:10am Immunization Therapies for CADASIL presented by Helena Karlström Associate Professor & Senior Lecturer at Karolinska Instituet-2024 MDBR Recipient
10:10-10:40am Small Molecule, Big Hopes for CADASIL Therapy Targeting RUNX1 presented by Joe Arbolea-Velasquez MD, PhD Associate Scientist Schepens Eye Research Institute Harvard Medical School
10:40-11:10am NIH Program Update presented by Manfred Boehm, MD Senior Investigator NIH Senior Investigator National Heart, Lung & Blood Institute
11:10-11:40am CADASIL Consortium: Past, Present, & Future presented by Michael Geschwind, MD, PhD UCSF Dept. of Neurology
11:40-11:55am CADASIL Community Natural History Study: Progress and Promise presented by Vinita Bahl, cureCADASIL Board Trustee
11:55-12:10pm Engaging Patient & Community Partners to Advance Meaningful Research presented by Jane Gunther, PhD. cureCADASIL Science Officer and Past President
12:10-12:55pm Engaging Patients & Community Partners in Advancing Meaningful Research Open Discussion Panel lead by Jane Gunther PhD., cureCADASIL Science Officer and Past President
12:25-12:30pm Closing Remarks Jane Gunther PhD., cureCADASIL Science Officer and Past President

Registration

  • $125 per adult
  • $40 per child, under the age of 18
  • $40 to attend virtually
  • Registrations covers entry to the event and eight (8) meals at the venue

Attendees are responsible for securing their hotel room(s) at the Hilton Chicago/Oak Brook Hills Resort and Conference Center, 3500 Midwest Rd, Oakbrook, IL 60523 and making their own travel arrangements.

Accommodations & Accessibility

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.

About the ULF Scientific Symposium and Family Conference: 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.

The cureCADASIL Patient-Investigator Meeting is made possible in part by grant 2022-316712 from the Chan Zuckerberg Initiative DAF, an advised fund of the Silicon Valley Community Foundation.

Thank you to the United Leukodystrophy Foundation for sponsoring this event and supporting our efforts to connect with the CADASIL community.

cureCADASIL Contact Information
Email: Info@cureCADASIL.org
https://curecadasil.org/

ULF Contact Information:
United Leukodystrophy Foundation 224 N. Second Street, Suite 2 DeKalb, IL 60115
815-748-3211
https://ulf.org/