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.
Sign up folks! And please share with others☺️
Bob Rauner This is amazing!
Morgan Elizabeth
Dr. Mallack is exceptional. He's my doctor. Honest, compassionate and dedicated to treating boys and woman with Adrenoleukodystrophy.
Jose Rivera this is so good to know! We should take Ava here!!
WONDERFUL!!!! Thank you all!!!
Thank you all of our sponsors, presenters, and especially all of our guests that took time to join us.
Great job Bob Rauner,Margaret Halter, Sa Von Rudenick, Kristie Kooyenga DeMarco, Marla Chapleau, John Wolf, Alan Fingeroot,Keely Haag,Tara Nunez !
Great job!!! 👏🏼👏🏼🙌🏼🙌🏼
Thanks!
It was AWESOME! I learned a lot this week. I look forward to meeting in person next year!
Thank u! Great presentation
Great job!
Thank you very much!
Thank you for a great virtual weekend
Thank you for all you do. May God Bless you all!! ❤️
From ARGENTINA... Fundación Lautaro te Necesita say THANKS FOR THESE 3 AMAZING DAYS!!! The Best for all of you...!
That was brilliant. Thank you so much. Would it be possible to have the answers/exercises available on your website? (Some weren’t answered to due to the timing). Thank you!
Great session! Love the phase...”Exercise is Medicine”. This is so true!!
Coming up at 2:30 PM CST, Respirators by Dr. Nadir Demirel. https://youtu.be/vT0p-6K8cGc
We missed this, was this recorded, somewhere to go and still watch?
Coming up at 2:30 PM CST, AGS presented by Dr. Adeline Vanderver. https://youtu.be/2234dRchUrg
She’s so thorough I had a hard time thinking up a question. 😁
Bone Marrow Transplants, Gene Therapy.... New Born Screening!! #ulf #unitedleukodystrophyfoundation #nevergivingup #youarenotalone
Learned a lot about VWM today. Love the work on the patient registry!!
Great presentation! "Participation is crucial" Please register! via: registerVWM@vumc.nl Or email: registerVWM@amsterdamumc.nl Prof. M.S. (Marjo) van der Knaap #findacureforvwm
Tuned in and extremely impressed. Thank you Dr Kemp and Engelen!!
Dr. Wolfgang Koehler section is amazing too!!! We miss you too...next year, fingers crossed, we can meet again in person!!
Great presentation! Learned something new = Bee stings 🙂
Great session Margaret and John!!
NEWS & EVENTS
Read past news and events by clicking the button below.
- Newborn Screening Saves Lives Reauthorization
- Research Study: Impact of COVID-19 on People Living with Rare Diseases and Their Families
- Patient Focused Drug Development Meeting on Krabbe Disease
- In Memorial or Honorarium – May 2020
- 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
Upcoming Events:
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Mon06Jul2020Mon13Jul2020
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Thu16Jul2020London
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Fri17Jul2020Royal Manchester Children's Hospital, Oxford Rd, Manchester M13 9WL, UK
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!