United Leukodystrophy Foundation

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.

As we prepare for ULF's Scientific Symposium and Family Conference, we would like to extend our sincere gratitude to the...
06/02/2026

As we prepare for ULF's Scientific Symposium and Family Conference, we would like to extend our sincere gratitude to the generous sponsors whose support helps make this event possible. Your investment in this annual event reflects a dedication to the leukodystrophy community and to the patients and families we serve. How about some ❤️to our sponsors for their generosity!

Caregiving: Shared Challenges and Practical Strategies. From Balance to Harmony.Join Kendra J. Bjoraker, Ph.D., L.P., fo...
06/01/2026

Caregiving: Shared Challenges and Practical Strategies. From Balance to Harmony.
Join Kendra J. Bjoraker, Ph.D., L.P., for this engaging and interactive forum discussion exploring the shared experiences of caregiving within the leukodystrophy community.
Caregivers of individuals with leukodystrophies face profound emotional, cognitive, and relational challenges that extend far beyond medical management. This interactive, roundtable session brings together caregivers to explore the shared, everyday realities of caregiving across leukodystrophies.
Please note: Due to the interactive and personal nature of this discussion, this session will be available exclusively to in-person attendees and will not be offered virtually.
Register for the conference today: ulf.org/scientific-symposium-family-conference

More than a race. More than a hobby. A community coming together for a meaningful cause.The Gregory Brown Memorial Race ...
05/29/2026

More than a race. More than a hobby. A community coming together for a meaningful cause.
The Gregory Brown Memorial Race has become a treasured annual tradition, bringing RC racers, families, and supporters together to celebrate Gregory Brown’s life and raise funds for the United Leukodystrophy Foundation. Join us June 13, 2026, at Jackson RC Raceway for a full day of racing, raffles, prizes, and community spirit.

There’s a new way to be part of our Annual Family Conference — no matter where you are.Our Online Auction officially ope...
05/21/2026

There’s a new way to be part of our Annual Family Conference — no matter where you are.
Our Online Auction officially opens June 1, giving families, friends, supporters, and our entire community the opportunity to participate before the conference even begins. Featuring thoughtfully curated and unique items, every bid helps support the mission of the United Leukodystrophy Foundation.
Whether you’ll be attending the conference in person or supporting from afar, we invite everyone to pre-register now so you’re ready to begin bidding when the auction opens.
Unable to travel to the conference? You can still join the excitement and support our community from wherever you are.
Conference attendees will also enjoy access to a separate onsite Silent Auction during conference weekend, featuring additional exclusive items.
🗓 Online Auction Opens: June 1
🕛 Auction Closes: Saturday, June 28 at 12 PM CST
🔗 Pre-Register to bid on the auction platform: https://givebutter.com/c/2026-Auction/auction

May is month, and taking care of your mental health is an act of self love. Within the leukodystrophy community, ment...
05/19/2026

May is month, and taking care of your mental health is an act of self love. Within the leukodystrophy community, mental health is an especially important part of the conversation. Caregivers, patients and loved ones often carry invisible emotional burdens while balancing uncertainty and day-to-day challenges. As we prepare to gather for the ULF Annual Scientific Symposium & Family Conference, we are reminded that community matters. Coming together to share experiences, learn from one another, and support each other can be a powerful source of strength and hope. https://ulf.org/scientific-symposium-family-conference/

Join us for our upcoming webinar:Intro to Adaptive Tai Chi: Safe Movement for Every Ability presented by Jen Keller, MS,...
05/18/2026

Join us for our upcoming webinar:
Intro to Adaptive Tai Chi: Safe Movement for Every Ability presented by Jen Keller, MS, PT
Sunday, May 31st at 2:00pm EST
Tai chi is a mindful movement practice that improves relaxation skills, mental focus, and physical alignment. With nearly 15 years of tai chi practice and more than two decades as a research physical therapist for people with neurodegenerative disorders, Jen is enthusiastic to offer classes in tai chi that are accessible to all ages, abilities, and physical conditions. Certified by Tai Chi Health (R) to teach programs in Tai Chi Fundamentals Adapted and Tai Chi Prime (evidence-based fall prevention program), Jen will offer an introductory class that can be done in sitting, standing with support (walker, cane, chair for support), or standing without support.
Register here: https://us02web.zoom.us/meeting/register/taoNU5yMQWaF7f-dZPwiqw?blm_aid=0 #/registration

The Gregory Brown Memorial Race returns on June 13, 2026 at Jackson RC Raceway in Jackson, NJ. This special annual even...
05/16/2026

The Gregory Brown Memorial Race returns on June 13, 2026 at Jackson RC Raceway in Jackson, NJ. This special annual event brings together the RC racing community to honor Gregory Brown, a young boy remembered for his bright smile, kind spirit, and the joy he brought to everyone around him.
The all-day event features RC racing, raffles, 50/50 drawings, special activities for kids, and more, all while raising donations to support the United Leukodystrophy Foundation.
Thank you to Brownie's Pro & Sport Hobbies, Jackson RC Raceway, and the incredible racing community for continuing Gregory’s legacy with heart, generosity, and support.

May is , and we’re reminded how important connection and support can be for individuals and families navigating the leu...
05/15/2026

May is , and we’re reminded how important connection and support can be for individuals and families navigating the leukodystrophy journey. Through the United Leukodystrophy Foundation Ambassador Program, families and caregivers are connected through a peer-to-peer support network built on compassion, understanding, and shared experience. Our Ambassadors help provide encouragement, resources, and a listening ear. Learn more at https://ulf.org/ambassadors/

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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

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