WHO WE ARE
The United Leukodystrophy Foundation (ULF), incorporated in 1982, is a non-profit, voluntary health organization dedicated to funding cutting-edge research and to providing patients and their families with disease information and medical referrals. The Foundation is located in DeKalb, Illinois.
OUR MISSION is to provide support to the leukodystrophy community and enable platforms to accelerate improving patient quality of life and finding cures.
OUR VISION is to meet the needs of patients and families, whether newly diagnosed or living with a leukodystrophy. Through unified collaboration with advocacy groups, medical and research professionals, and pharma/biotech companies, we provide support, networking, and education to help navigate the journey of the disease.
Taking Care of Yourself When Taking Care of Others | Blue Cross Blue Shield of Illinois
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Look around and you’ll see caregivers. In the U.S., 1 in 3 ad...
Kristie's Story Part 1: Journey to a Diagnosis - Patient Worthy
bit.ly
Don't miss this story about Kristie DeMarco, who was diagnosed with Refsum disease.I became a board member at ULF because they have been by my side every step of the way. I wanted to be part of such a great organization and help others like they have helped me.
Morgan Elizabeth
DARE Events | Global DARE Foundation
www.defeatadultrefsumeverywhere.org
Global DARE Foundation conducts webinars and other events to engage and educate the Refsum Community on Refsum Disease specific topics. All times below are in Eastern Standard TimeI’m looking forward to joining the ULF conference this year to bring awareness to this ultra rare Leukodystrophy.
Learn more : ulf.org/leukodystrophies/refsum-disease/
Join our Cloud HD Video Meeting now
us02web.zoom.us
Zoom is the leader in modern enterprise video communications, with an easy, reliable cloud platform for video and audio conferencing, chat, and webinars across mobile, desktop, and room systems. Zoom ...A message from Board President, Robert Rauner. https://youtu.be/katXIiIDUbA
"Remember, you're the one who can fill the world with sunshine." Thank you !
Amazing!
Awesomeness
www.minoryx.com
The NEXUS clinical trial is a phase 2, open-label clinical study that has been designed to assess the efficacy and safety of leriglitazoneOne Day. One Goal. One Amazing Leukodystrophy Community! #ThankfulWednesday
That is so awesome!!
🙌🏼🙌🏼🙌🏼
Thank you all! Together we are making a difference!
This is so amazing!!!
Thanks for your support. Can we get to $35,000.00 before the day is done?
You inspire me Joe! I'll never forget when you told me about how you became involved or maybe better stated, drawn in by the families and medical professionals in the ULF family. And now, I get to serve alongside you! What an honor and thank you for always bringing your ideas and input forward.
Thank you Dr. Hacia! “Kindness is the language which the deaf can hear and the blind can see.”
Our family loves Dr. Joe!
SPECTACULAR video....soooooo many memories!!!💚🙏💚🙏
Memories last forever ❤
Great picture and video.
Great video and sad to see those no longer with us. Thanks for sharing ❤️
Thank you Dr. Keller!
Dr. Keller you said it so well, together we can make a difference. We all have a story on how our path lead us to where we are now and I am so grateful to have you, your depth of knowledge and insightful perspective helping to guide the ULF in serving the needs of our ULF community! Thank you very much for your contributions to the foundation and as a front line worker during this Pandemic.
Thank you Dr. Stephanie!!
Wow!!!! Generosity during a time of great uncertainty is on display today.
NEWS & EVENTS
Read past news and events by clicking the button below.
- Dylan Joseph Changle, Krabbe Disease
- Kristie DeMarco, Refsum Disease
- Taking Care of Yourself When Taking Care of Others
- In Memorial or Honorarium – April 2020
- Minoryx Nexus Clinical Study for cALD
- #GivingTuesdayNow is May 5, 2020
- Sam Buck, VWM
- Addy Moss, 4H Syndrome
- Life During the Covid-19 Crisis: A Chat with Dr. Bernard
- In Memorial or Honorarium – March 2020
Upcoming Events:
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Sat06Jun2020Brooklyn, NY
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Sat06Jun2020Sun07Jun2020Alton Towers in Alton, Staffordshire, England
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Thu11Jun2020Fri12Jun2020201 North 17th Street, Philadelphia, Pennsylvania, United States of America
WHAT WE DO
01.
Every year, the ULF puts a call out to the leukodystrophy medical community asking for research proposals that need funding. Thanks to generous donations, the ULF has been able to grant over $450,000 for medical research since 2010.
02.
The ULF works to establish a communication network among families; as well as increase public awareness and acts as an information source for health care providers by promoting and supporting research into causes, treatments and prevention of the leukodystrophies.
03.
Whether you are connected by blood, friendship, faith or diagnosis; having the unwavering support of your family can help you keep going when things get tough. The ULF has supported families facing the devastating diagnosis of leukodystrophy for over 35 years. We are proud to be a part of your family’s support network.
04.
The Scientific Symposium and Family Conference has been a Foundation staple by providing a venue for families and medical professionals to come together. The 2019 Annual Conference welcomed the largest attendance of families and medical professionals yet.
05.
Need help finding a doctor who specializes in leukodystrophy in your area? Contact the ULF by phone, email or social media. We are happy to assist!
06.
A key piece to fundraising success is marketing. The ULF is happy to help you strategize to make the most of your event whether you are holding a spaghetti supper, 5K run/walk event or a bake sale.
SHARE YOUR STORY
DONATE
Support medical research and programming!
For the past 35 years, the United Leukodystrophy Foundation has provided hope to families who face the devastating diagnosis of leukodystrophy. Over our history, the ULF has been a resource for information, medical referrals, research grants, programming and a support network to remind affected individuals that they are not alone in this fight.
Please consider showing your support today!