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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.

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United Leukodystrophy Foundation
7 hours ago
United Leukodystrophy Foundation
Join us this week for our Support Group Sessions: Spouses of Affected Adults () and Women with AMN (). Click links to register. Wed. 1/26 at 7 PM Central, please note the time zone! #notgivingup #ulf ... See MoreSee Less
Join us this week for our Support Group Sessions: Spouses of Affected Adults (https://bit.ly/3t5cLym) and Women with AMN (https://bit.ly/32Z94j5). Click links to register. Wed. 1/26 at 7 PM Central, please note the time zone! #notgivingup #ulf
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United Leukodystrophy Foundation
2 days ago
United Leukodystrophy Foundation
Additional patients are welcome!
Vanishing White Matter (VWM) Guanabenz Trial
Visit:
More:
E-mail: RegisterVWM@amsterdamumc.nl ... See MoreSee Less
Additional patients are welcome! Vanishing White Matter (VWM) Guanabenz Trial Visit: www.vwmconsortium.org More: https://www.trialregister.nl/trial/7260 E-mail: RegisterVWM@amsterdamumc.nl
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United Leukodystrophy Foundation
4 days ago
United Leukodystrophy Foundation
BREAKING NEWS! ALD Connect has received approval from the FDA to host an Externally-Led Patient-Focused Drug Development meeting (EL-PFDD).

Our proposed target patient population for this meeting is Adrenoleukodystrophy (ALD) in Adulthood:
Men with AMN
Men with cerebral ALD
Women with ALD

This is an opportunity to meet with the FDA and share patient perspectives, which are critical to help provide context when FDA makes regulatory decisions for new drugs. We believe this EL-PFDD meeting will allow the FDA and other key stakeholders to obtain a wide range of patient, caregiver, and healthcare provider input on ALD. This includes their perspectives on their condition, its impacts on daily life, the landscape of current treatment options, as well as input into outcomes and patient preferences for future therapies. Our goal is to publish a report that documents the severe disease burden and unmet medical need of ALD and AMN in patients' own voices. Our hope is that it will influence every stage of drug development.

For more information about the PFDD program: ; ... See MoreSee Less
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United Leukodystrophy Foundation
1 week ago
United Leukodystrophy Foundation
SUPPORT GROUPS: Join us on Zoom on 1/26, 7 PM C! Registration is required. Support Group sessions are NOT recorded.
Spouses, register here:
AMN Women, register here:
Check out the 2022 Schedule here: ... See MoreSee Less
SUPPORT GROUPS: Join us on Zoom on 1/26, 7 PM C! Registration is required. Support Group sessions are NOT recorded. Spouses, register here: https://bit.ly/3t5cLym AMN Women, register here: https://bit.ly/32Z94j5 Check out the 2022 Schedule here: https://bit.ly/3rnBDPk
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United Leukodystrophy Foundation
3 weeks ago
United Leukodystrophy Foundation
From us at the ULF, we wish you a Happy New Year! As 2021 draws to a close we hope you consider a donation as an investment in the mission of hope for families affected by leukodystrophy in 2022 and beyond. Thank you for your support this year and always! ulf.org/donate ... See MoreSee Less
From us at the ULF, we wish you a Happy New Year! As 2021 draws to a close we hope you consider a donation as an investment in the mission of hope for families affected by leukodystrophy in 2022 and beyond. Thank you for your support this year and always! ulf.org/donate
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United Leukodystrophy Foundation
4 weeks ago
United Leukodystrophy Foundation
As 2022 quickly approaches, the 40th year of the ULF comes with it. We have only survived this long because of the support of our community. Please consider an end of year gift to the ULF as we continue to fulfill our mission of hope! ... See MoreSee Less
As 2022 quickly approaches, the 40th year of the ULF comes with it. We have only survived this long because of the support of our community. Please consider an end of year gift to the ULF as we continue to fulfill our mission of hope! https://ulf.org/donate/
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United Leukodystrophy Foundation
4 weeks ago
United Leukodystrophy Foundation
Leukodystrophy can present at any time in life, from birth to a person's 50's, 60's, or beyond. Your support allows us to provide support to those who need it, regardless of age. Your donation of any size is appreciated! ... See MoreSee Less
Leukodystrophy can present at any time in life, from birth to a persons 50s, 60s, or beyond. Your support allows us to provide support to those who need it, regardless of age. Your donation of any size is appreciated! https://ulf.org/donate/
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United Leukodystrophy Foundation
1 month ago
United Leukodystrophy Foundation
ALD is the most common type of leukodystrophy, but the ULF strives to represent all 50+ different forms and offer support to the entire leukodystrophy community. Your support is appreciated now more than ever before. ... See MoreSee Less
ALD is the most common type of leukodystrophy, but the ULF strives to represent all 50+ different forms and offer support to the entire leukodystrophy community. Your support is appreciated now more than ever before. https://ulf.org/donate/
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United Leukodystrophy Foundation
1 month ago
United Leukodystrophy Foundation
Any leukodystrophy diagnosis can be devastating to face - but did you know that undiagnosed leukodystrophies exist? Too many in our community face this undiagnosed diagnosis. Help the ULF support research to give these families the answers they need. ... See MoreSee Less
Any leukodystrophy diagnosis can be devastating to face - but did you know that undiagnosed leukodystrophies exist? Too many in our community face this undiagnosed diagnosis. Help the ULF support research to give these families the answers they need. https://ulf.org/donate/
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<3 Maddy

United Leukodystrophy Foundation
1 month ago
United Leukodystrophy Foundation
Did you miss last night's webinar? Don't worry! It's now on YouTube! Watch the Sibling Experience now: ... See MoreSee Less
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Thank you !

United Leukodystrophy Foundation
1 month ago
United Leukodystrophy Foundation
Tonight, 7 PM Central! It's not too late to register to join the conversation - all are welcome, not just siblings. The Chapleaus explore the challenges that face a family affected by leukodystrophy. Registration required: #ulf #notgivingup ... See MoreSee Less
Tonight, 7 PM Central! Its not too late to register to join the conversation - all are welcome, not just siblings. The Chapleaus explore the challenges that face a family affected by leukodystrophy. Registration required: https://bit.ly/3rO2ea8 #ulf #notgivingup
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Thank you Alex & Liam!

United Leukodystrophy Foundation
1 month ago
United Leukodystrophy Foundation
Did you know that we ALWAYS receive 100% of your donated funds from Facebook? By starting a Facebook fundraiser, or by simply hitting the donate button, you are supporting the ULF's mission of Hope this holiday season! facebook.com/ulfunited #notgivingup ... See MoreSee Less
Did you know that we ALWAYS receive 100% of your donated funds from Facebook? By starting a Facebook fundraiser, or by simply hitting the donate button, you are supporting the ULFs mission of Hope this holiday season! facebook.com/ulfunited #notgivingup
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❤ Smiles are contagious 😷😀 ❤ Our Journey with Jax - Vanishing White Matter Disease

United Leukodystrophy Foundation
1 month ago
United Leukodystrophy Foundation
This Thursday! Dec. 16th, 7 PM Central. Siblings of Leukodystrophy: an open conversation on the experience of a family unit affected by leukodystrophy. All are welcome, not just siblings! Registration required: #ulf #notgivingup ... See MoreSee Less
This Thursday! Dec. 16th, 7 PM Central. Siblings of Leukodystrophy: an open conversation on the experience of a family unit affected by leukodystrophy. All are welcome, not just siblings! Registration required: https://bit.ly/3rO2ea8 #ulf #notgivingup
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United Leukodystrophy Foundation
2 months ago
United Leukodystrophy Foundation
Join us next week! Thursday, Dec. 16th, 7 PM Central. Everyone, not just siblings, are welcome in this webinar lead by Alex and Liam Chapleau focusing on the experiences of a family affected by leukodystrophy. Registration required: #ulf #notgivingup ... See MoreSee Less
Join us next week! Thursday, Dec. 16th, 7 PM Central. Everyone, not just siblings, are welcome in this webinar lead by Alex and Liam Chapleau focusing on the experiences of a family affected by leukodystrophy. Registration required: https://bit.ly/3rO2ea8 #ulf #notgivingup
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Thank you for organizing this series!

NEWS & EVENTS

Read past news and events by clicking the button below.
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Upcoming Events

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WHAT WE DO

01.

+ We Find & Fund

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.

+ We Build Networks

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.

+ We Strengthen

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.

+ We Educate

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.

+ We Provide Referrals

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.

+ We Help You Fundraise

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.

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SHARE YOUR STORY

Every day Henry teaches me how to live.

His presence and smile are constant reminders of how amazing it is to be alive and breathing.
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Nicki was 8 when he was diagnosed with ALD. 

He loved to ride his bike and he lived a full life with high quality living until his last breath.
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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!

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