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United Leukodystrophy Foundation

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United Leukodystrophy Foundation

The United Leukodystrophy Foundation serves families affected by leukodystrophy by promoting progress on research, treatment, and prevention.

The United Leukodystrophy Foundation (ULF), incorporated in 1982, is a non-profit, voluntary health organization dedicated to providing patients and their families with information about the disease and with assistance in identifying sources of medical care, social services, and genetic counseling; establishing a communication network among families; increasing public awareness and acting as an i

nformation source for healthcare providers; and promoting and supporting research into causes, treatments, and prevention of the leukodystrophies. Leukodystrophies make up a group of genetic, nervous system disorders affecting the myelin sheath, which insulates the axon through which nerve impulses are conducted. The ULF is supported solely by donations.

09/05/2026

Help us make the public right from home this September! Visit our website to discover ways you can get involved during Leukodystrophy Awareness Month. Download and share awareness graphics, share your story to help others understand the impact of leukodystrophy, or even start a fundraiser in support of the leukodystrophy community.
Explore all the ways you can get involved: ulf.org/get-involved/leuko-aware

09/05/2026

WEBINAR: All About IEP’s
Join us Sunday, September 27, 2026, at 2pm ET/1 PM CT
Presented by: Misty Powers, ULF Ambassador
Navigating special education and the IEP process can feel overwhelming. Join ULF Ambassador Misty Powers for a practical discussion based on Wrightslaw: All About IEPs, focusing on how parents and educators can better understand, navigate, and advocate throughout the IEP process.
The discussion will cover key components of an IEP, effective advocacy strategies, parent participation, services and accommodations, measurable goals, progress monitoring, and important legal rights and procedural safeguards. Participants will also learn about common challenges families face and practical ways to prepare for and participate more confidently in IEP meetings.
Hosted by: Marla Chapleau, ULF Ambassador, United Leukodystrophy Foundation
REGISTER TODAY: https://ulf.org/event/ulf-webinar-all-about-ieps/

09/04/2026

Did you know the central nervous system (CNS) controls thoughts, movements, and sensations. Leukodystrophy disrupts the CNS by damaging the myelin that protects nerve fibers.
Be Learn more at ULF.org/leuko-aware

09/03/2026

What happens when a rare disease community comes together from around the world?
Researchers sharing discoveries.
Clinicians sharing knowledge.
Families sharing lived experience.
Advocates opening doors.
Partners turning possibilities into action.
That's the power behind the 2026 MSD Virtual Summit. And we’re honored to have Dr. Peter Marks deliver our Closing Keynote:
🎤 “Making Rare Disease Treatment a Reality”
It’s a powerful reflection of where the MSD community is today—and where we’re headed next.
🌎 September 18–19, 2026
💻 FREE + Virtual
🗣️ Live translation | 60+ languages
🤝 A global community
Registration closes September 4. Don’t miss this moment. Grab your spot today →
https://curemsd.org/2026-virtual-summit/

Cure MSD

09/02/2026

A milestone years in the making. A new chapter begins.
For years, families, researchers, clinicians, advocates, and partners have been working toward this moment.
On July 6, 2026, the U.S. Food and Drug Administration cleared the Investigational New Drug (IND) application for the first-ever clinical trial of an investigational gene therapy for children with MSD.
That means the study can move forward into its first-in-human clinical phase.
This is more than a regulatory milestone.
It's a testament to what can happen when a community comes together around a shared goal—and keeps pushing forward, one research milestone at a time.
Our Research Strategy was built to help guide that journey: identifying the research areas with the greatest potential to advance treatment and directing resources where they can make the greatest impact.
The roadmap brought us here.
Now, we're moving into the next chapter.
🧬 Research →
🔬 Preclinical development →
🤝 Partnership →
📋 Regulatory clearance →
🦓 Clinical trial
The work isn't over. But the path forward has never been clearer.
Explore our Research Strategy → https://heyzine.com/flip-book/a3b4e382f7.html

Cure MSD

09/02/2026

MSD may be ultra-rare. Our community is global. 🌎
Behind every pin on this map is a family. Behind every family is a story.
And behind every story is a reason to keep moving forward.
Meet some of the families who make up the global MSD community:
🦓Ethan
🦓Mady
🦓Michał
🦓Riley C.
🦓Remy
🦓Saachi
🦓Zeuri
Different countries. Different journeys. Different stories.
But one shared connection:
All fighting for a cure built on relentless hope.
The United MSD Foundation exists to make sure no family has to navigate this diagnosis alone—and to ensure that the stories of today's families help shape a future with effective treatments.
This month, we're proud to celebrate the people at the heart of this work.
Meet more MSD families and read their stories → https://ow.ly/rx4o50ZHst4
Because research may move us toward a cure.
But families are the reason we keep moving.

Cure MSD

09/02/2026

What can a community accomplish when it refuses to accept “there's nothing we can do”?
A lot.
The United MSD Foundation (Cure MSD) was founded with one mission: to cure Multiple Sulfatase Deficiency.
Relentless Hope. Real progress.
For 10 years, the United MSD Foundation has worked alongside families, researchers, clinicians, donors, and partners around the world to turn the goal of a treatment for MSD into a possibility.
We've helped fund and advance:
🧬 Gene therapy research
🔬 Preclinical and toxicology studies
📊 Natural history research
🧪 The first-ever MSD Patient Registry and Biobank
🔎 Biomarker development
🌎 International research collaborations
And on July 6, 2026, the FDA cleared the Investigational New Drug (IND) application for the first-in-human clinical trial of an investigational gene therapy for children with MSD.
That is what years of persistence, partnership, and belief can accomplish.
But we haven't done it alone.
Families. Researchers. Clinicians. Funders. Industry partners. Advocacy organizations.
This is the power of partnership. This is the power of a community built on hope and bound for breakthroughs.
Read our story → curemsd.org/our-story

09/02/2026

Today, Cure MSD is taking over our social media. Follow along throughout the day to learn more about their work and impact within the leukodystrophy community!

Have you heard of the ultra-rare leukodystrophy, Multiple Sulfatase Deficiency (MSD)?
This ultra-rare genetic disease is caused by harmful changes in both copies of the SUMF1 gene. SUMF1 helps activate 17 sulfatase enzymes throughout the body. When it isn't working properly, those enzymes aren't fully activated, leading to a complex disease that affects multiple body systems—including the brain and nervous system.
MSD is both a leukodystrophy and a lysosomal storage disorder, making connection and collaboration across the rare disease community especially important.
For families living with MSD, awareness means more than recognition.
It means more understanding. More research. More connection. And, ultimately, more hope for a cure.
We're grateful to ULF for bringing the leukodystrophy community together through and giving us the opportunity to share the MSD story. Learn more here: https://curemsd.org/our-story/
Because every rare disease deserves to be seen—and every family deserves hope.

09/01/2026

September is here, and Leukodystrophy Awareness Month has officially begun! All month long, we’ll be raising our voices, sharing stories, and working together to help more people understand leukodystrophy and its impact on individuals and families.
We’re also excited to welcome organizations from across the leukodystrophy community as they take over our social media throughout September, sharing their work, resources, stories, and unique perspectives. We can’t wait for you to connect with them!
There are so many ways you can help raise awareness, too:
LEARN: Share facts and resources with your network
SHARE: Share your story
SUPPORT: Join or donate to our ULF LeukoAware Fundraising team
Together, we can help the world become more .
Get started today and visit: https://ulf.org/get-involved/leuko-aware/

08/26/2026

Turn Awareness Into Action!
September is Leukodystrophy Awareness Month, and we’re inviting YOU to get involved and raise awareness! Create your own fundraiser, share your story, rally your network, and make a difference for the leukodystrophy community.
👉 Get involved ulf.org/leuko-aware
Together, we can raise awareness, support families, and drive research!

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224 N. Second Street, Suite 2
Dekalb, IL
60115

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Monday	9am - 5pm
Tuesday	9am - 5pm
Wednesday	9am - 5pm
Thursday	9am - 5pm
Friday	9am - 5pm

Website

http://www.ulf.org/

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