2024 cureCADASIL Patient-Investigator Meeting
- Date: June 29, 2024
- Time: 9:00 am – 12:30 pm CDT
- Location: Eaglewood Resort and Spa, Itasca, IL (or virtually)
- Cost: $50 per adult, $30 per child (<18), $50 for virtual attendance
- Registration: https://ulf.org/news/conference/family-register/
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
Saturday, June 29
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
José Biller, MD
Loyola University Chicago Stritch School of Medicine, Chicago
Elisa Ferrante, PhD
National Institute of Medicine, 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
Schedule of Events
Time | Topic | Speaker |
---|---|---|
9:00 – 9:10 | Welcome and Introduction | Bertram Kasiske, MD President, cureCADASIL |
9:10 – 10:00 | Developing Treatments for CADASIL in Partnership with Patients and Families | Community Advisory Group Panel Moderated by Fanny Elahi, MD, PhD Icahn School of Medicine at Mount Sinai, New York |
10:00 – 10:15 | The CADASIL Consortium, an Update | José Biller, MD Loyola University Chicago Stritch School of Medicine, Chicago |
10:15 – 10:30 | National Heart Lung Blood Institute, an Update | Elisa Ferrante, PhD National Institute of Medicine, Bethesda |
10:30 – 10:45 | Break | |
10:45 – 11:10 | Immunotherapy as Treatment Strategies for CADASIL | Helena Karlström, PhD Karolinska Institute, Sweden |
11:10 – 11:35 | Patient Stratification and Biomarker Development for NOTCH3 – Targeting Therapies | Julie Rutten, MD, PhD Leiden University Medical Center, The Netherlands |
11:35 – 12:25 | Panel Discussion | All In Person and Online Participants |
12:25 – 12:30 | Announcement: cureCADASIL fall Fundraising campaign! | |
5:30 | Informal Social Hour for In Person Attendees |
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/