cureCADASIL

10/04/2026

Save the date! If you're local to the NYC area, please join us for an in-person event marking four years of collaborative work made possible through a Chan Zuckerberg Initiative grant awarded to Dr. F***y Elahi and cureCADASIL to advance CADASIL research.

More details to follow.

10/01/2026

🤝 Bringing patients and researchers together is an important part of advancing CADASIL research.
cureCADASIL's Annual Patient-Investigator Meeting creates an opportunity for patients, families, clinicians, and researchers to connect, exchange knowledge, and discuss progress and priorities in CADASIL research.
These conversations help ensure that the patient voice remains part of the research process as we work toward better treatments and, ultimately, a cure.

10/01/2026

💙 Wherever you are in your CADASIL journey, you don't have to navigate it alone.
cureCADASIL provides resources to help patients and families learn about CADASIL, find specialists and care resources, connect with others who understand the journey, and access support, education, and advocacy tools.
You can also join the CADASIL Community Natural History Study and help accelerate research.
Visit curecadasil.org to explore our resources and learn more.

10/01/2026

💙 Every breakthrough in CADASIL research starts with a community that shows up.
Whether you volunteer your time, make a donation, share your story, or participate in research, your involvement can help accelerate progress for everyone affected by CADASIL.
Here are a few ways you can make a difference:
✅ Join the CADASIL Community Natural History Study to help advance research and improve understanding of the disease
✅ Volunteer with cureCADASIL and support awareness, education, and advocacy initiatives
✅ Make a donation to help fund critical research and patient programs
✅ Participate in research studies that advance our understanding of CADASIL and bring us closer to new treatment options
✅ Help raise awareness by sharing resources and information within your community
Together, we can drive research forward, strengthen support networks, and create hope for people living with CADASIL.
Learn how to get involved at curecadasil.org cureCADASIL

10/01/2026

🔬 Advancing CADASIL research starts with collaboration.
At cureCADASIL, we actively partner with researchers and clinicians around the world to accelerate progress toward better treatments and, ultimately, a cure. Through research funding, community engagement, and scientific collaboration, we help connect the CADASIL community with the experts working to better understand this disease.
One of the most impactful ways we do this is through our annual Patient-Investigator Meeting.
Our 2026 meeting brought together patients, caregivers, clinicians, and leading researchers in person to share the latest findings, discuss community priorities, and build partnerships that will help shape the future of CADASIL research.
When patients and researchers come together, discoveries move forward.
💙 Learn more about our commitment to research and collaboration at curecadasil.org

10/01/2026

💙 A CADASIL diagnosis can feel overwhelming, but you don't have to navigate it alone.
With the help of our partners, volunteers, and community members, we've created a central hub of resources designed specifically for people living with CADASIL and their families.
Our new and improved cureCADASIL website includes information to help you:
✅ Learn about CADASIL and what to expect
✅ Find specialists and care resources
✅ Connect with others who understand the journey
✅ Access support, education, and advocacy tools
✅ Join the CADASIL Community Natural History Study to help accelerate research

Whether you're newly diagnosed, caring for a loved one, or looking for trusted information, we're here to help.
Explore our updated resources at curecadasil.org (link to: https://curecadasil.org/patient-hub.html)

09/30/2026

🚴‍♂️ Every mile makes a difference.
Since 2019, Team CADASIL has proudly participated in the University of Pennsylvania’s Million Dollar Bike Ride, an annual event dedicated to advancing rare disease research. From road rides to stationary bike challenges, our community has come together year after year to support groundbreaking CADASIL research.
Thanks to the dedication of our riders, supporters, and donors, more than $700,000 has been raised to fund critical CADASIL research projects to date.
Together, we're turning every pedal stroke into progress and bringing hope to families affected by CADASIL.
cureCADASIL

09/30/2026

In honor of , we're taking over the social media accounts for the United Leukodystrophy Foundation today. Follow along with them to learn more about cureCADASIL.

💙 Meet cureCADASIL
cureCADASIL is a volunteer-led nonprofit dedicated to advancing research, awareness, and support by connecting patients, researchers, clinicians, and partner organizations to accelerate CADASIL research and therapeutic development.
CADASIL is the most common inherited form of stroke, caused by a change in the NOTCH3 gene. The disease damages the brain's small blood vessels and can lead to migraines, recurrent strokes, seizures, cognitive decline, and, for some, dementia. Many individuals also experience serious psychiatric symptoms, including depression, apathy, and behavioral changes.
Symptoms often begin between ages 30 and 50, yet CADASIL is frequently overlooked, misdiagnosed, or diagnosed late. CADASIL affects people differently, has no approved treatments and offers few effective symptomatic options.
Because CADASIL is hereditary, each child of an affected parent has a 50% chance of inheriting the disease, making its impact deeply personal for families across generations.
Through research, education, advocacy, and community support, cureCADASIL is working toward a future with better treatments and ultimately a cure.
Follow along today to learn more about our mission and the impact we are making for the CADASIL community.

09/16/2026

📢 Funding Alert for CADASIL Research!

$106,000 grant made possible by cureCADASIL, Team CADASIL & Million Dollar Bike Ride

📝LOI deadline: Friday, September 18, 2026 by 8pm (ET)
⏰Proposal Due Date: Monday, October 19, 2026 by 8pm (ET)
💡Proposed funding period: February 1, 2027 – January 31, 2028

Let’s continue to push CADASIL research forward! Please share with labs & researchers who could benefit.
See bio for links.

09/10/2026

Email from cureCADASIL Applications are open. LOIs are due September 18 at 8 PM ET.     View Grant Details & Apply cureCADASIL | PO Box 390023 | Edina, MN 55439 US Unsubscribe | Update Profile | Const