2025 cureCADASIL Patient-Investigator Meeting

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.

Who should attend?

  • Individuals living with CADASIL
  • Family members
  • Friends
  • Caregivers
  • CADASIL clinicians & researchers

Scholarships are Available

Scholarships to attend the ULF Family Conference in-person are available, but applications need to be received by February 14.

Saturday, June 28

Come meet your CADASIL community!
The Patient-Investigator Meeting will take place on the second day of the ULF Family Conference, with informative talks by leaders at cureCADASIL and CADASIL research investigators:

Fanny Elahi, MD, PhD
Icahn School of Medicine at Mount Sinai, New York

Jamie Elliott, MD, PhD
University of Wisconsin School of Medicine and Public Health

Elisa Ferrante, PhD
National Institute of Health, Bethesda

Helena Karlström, PhD
Karolinska Institute, Sweden

Julie Rutten, MD, PhD
Leiden University Medical Center, The Netherlands

Debarag Banerjee, PhD
Community Advisory Group Member

Andria Burroso
Community Advisory Group Member

Ki Coale
Community Advisory Group Member

Sheila Connor
Community Advisory Group Member

Courtney Deplaris
Community Advisory Group Member

Michael Kennedy
Community Advisory Group Member

Sarah McDaniels, PhD
Community Advisory Group Member

Registration

  • $50 per adult
  • $30 per child, under the age of 18
  • $50 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 Eaglewood Resort and Spa (16 miles from O’Hare International Airport; ORD) and making their own travel arrangements. The meeting will be in person, but if you cannot attend in person there will also be an opportunity to participate online, virtually.

Accommodations & Accessibility

Families or individuals seeking accommodations can book with the Eaglewood Resort & Spa with the event link below. If you need special accessibility accommodations or a room closer to the conference area, contact Sarah Mabeley, Group Reservations Agent at 630-694-5923.

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: [email protected]
https://curecadasil.org/

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