2023 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

Thursday, June 22

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

Don’t miss Dr. Fanny Elahi, lead researcher on the Chan Zuckerberg Initiative Patient-Partnered Collaboration,  presenting at the United Leukodystrophy Foundation Scientific Symposium on Thursday, June 22nd. Her talk, titled “CADASIL-centered modeling of vascular leukoencephalopathy,” will be at 10:00am.

Saturday, June 24

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:

Bertram Kasiske, MD
President, cureCADASIL

Jane Gunther, PhD, DABT
Science Officer, cureCADASIL

Stephen Fitzsimons, PhD
Elahi Lab, Icahn School of
Medicine at Mount Sinai, New York

Jane Paulsen, PhD
University of Wisconsin, Madison

Manfred Boehm, MD
National Heart and Lung Blood Institute, NIH

Joseph Arboleda-Velasquez, MD, PhD
Harvard Medical School

Schedule of Events

Time Topic Speaker
9:00 – 9:10 Welcome and why we are here Bertram Kasiske, MD
President, cureCADASIL
9:10 – 9:35 “The Need for Patient Engagement in the Landscape of
Potential Therapeutics”
Jane Gunther, PhD, DABT
Science Officer, cureCADASIL
9:35 – 10:00 “Pathways for the Identification of Potential Therapeutic Targets
for the Treatment of CADASIL”
Stephen Fitzsimons, PhD
Elahi Lab, Icahn School of Medicine at Mount Sinai, NY
10:00 – 10:25 “The CADASIL Consortium: A Multicentered Natural History Study” Jane Paulsen, PhD
University of Wisconsin, Madison
10:25 – 10:50 “Unraveling CADASIL: the NIH Patient-Centered CADASIL
Program to Understand the Mechanism and Clinical Phenotypes”
Manfred Boehm, MD
National Heart and Lung Blood Institute, NIH, Bethesda, MD
10:50 – 11:15 “Notch3 Signaling and Aggregation as Targets for the Treatment
of CADASIL and Other NOTCH3-Associated Small-Vessel Diseases”
Joseph Arboleda-Velasquez, MD, PhD
Harvard Medical School, Boston, MA
11:15 – 11:30 Break
11:30 – 12:30 Panel Discussion with Questions and Comments from the Audience Speakers and Audience


Do you have questions about CADASIL, research studies, cureCADASIL, or other relevant topics? Please share with us and our speakers will do their best to address them during the meeting.


  • $25 per adult
  • $10 per child, under the age of 18
  • 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.

Financial Assistance

Families in need of financial assistance to attend this year’s meeting are encouraged to apply for a scholarship provided by the ULF. The ULF will waive the registration fees for two (2) adults and three (3) children, and cover the cost of one hotel room for the three (3) nights of the Family Conference.

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]

ULF Contact Information:
United Leukodystrophy Foundation 224 N. Second Street, Suite 2 DeKalb, IL 60115