United Leukodystrophy Foundation

10/10/2026

Join the United Leukodystrophy Foundation (ULF) tomorrow Sunday, October 11th at 1:00 PM ET/ 12:00 PM CT for a virtual support group designed specifically for caregivers of families affected by leukodystrophies.
Register here: https://us02web.zoom.us/meeting/register/lY3UG0_RRvejfALZyJ1NIg #/registration

10/08/2026

Ionis Pharmaceuticals invites people living with Alexander Disease who are starting or already receiving Zanvastro (Zolgensma) and their caregivers to participate in a voluntary observational study. Please review the Astro-AxD Study information for more details. Follow link to learn more:

10/06/2026

📺 Haven’t had a chance to watch the 2026 ULF Family Conference recordings yet?

There’s still so much to revisit! Whether you attended in person, joined virtually, or couldn’t make it this year, our recording playlist is available to watch anytime.

Explore sessions covering research and clinical updates, disease-specific education, caregiver and patient resources, advocacy, and living with leukodystrophy.

🎥 Watch the 2026 ULF Family Conference recordings: https://ow.ly/XT3S50ZUJfS

Save the playlist, share it with your family, and come back whenever you need it. 💙

Welcome to the 2026 United Leukodystrophy Foundation (ULF) Family Conference recording playlist! This playlist features educational sessions presented during...

10/05/2026

What started with one family’s journey has grown into an incredible community that shows up year after year for Clark and for every family affected by leukodystrophy.

And this year, they did it again - breaking another Kicks for Clark fundraising record! 🎉

Jen Cutler, thank you for pouring so much love, energy, and determination into this event year after year. The difference you and your family make is bigger than you probably realize. And Clark, thank you for being the reason so many people come together, celebrate, and give so generously.

To everyone who came out to Saddle Up, donated, bought a ticket, sponsored the event, shared a post, hit the dance floor, or simply cheered Jen and Clark on, thank you! You helped make this year's Kicks for Clark the most successful one yet.

The support raised through this event helps the United Leukodystrophy Foundation continue to be there for families, connect our community, provide education and support, and advance our mission to improve the lives of those affected by leukodystrophies.

We are so grateful to be part of your story and to have such an amazing community standing beside you.

10/02/2026

Join the United Leukodystrophy Foundation (ULF) Sunday, October 11th at 1:00 PM ET/ 12:00 PM CT for a virtual support group designed specifically for caregivers of families affected by leukodystrophies.
Register here: https://us02web.zoom.us/meeting/register/lY3UG0_RRvejfALZyJ1NIg #/registration

10/01/2026

LeukoAware may be over, but the work continues. Throughout September, we came together to raise awareness, share stories, educate our communities, and shine a light on the families living with leukodystrophy.
We were also proud to highlight our patient advocacy groups doing incredible work across the leukodystrophy community and the families who shared their stories. Thank you to all who joined us in helping make this month of awareness so meaningful. Your work and your voices matter.
Now, as we look toward the giving season, we’re asking you to stay connected and stay with us. Together, we can continue to support families, advance research, and provide education and resources. Stay tuned. And get ready to make a difference.

09/30/2026

💙 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

09/30/2026

🔬 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

09/30/2026

💙 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