Newborn Screening Saves Lives Reauthorization

Thank you ALL for supporting last year’s sign on letter to add language to Newborn Screening Saves Lives Reauthorization which would fund states in order for every state to become RUSP compliant. As we know Newborn Screening Saves Lives Reauthorization is still undergoing challenges with pushback from Senator Rand Paul…

Minoryx Nexus Clinical Study for cALD

Minoryx Therapeutics is recruiting for a clinical trial focusing on cALD in Europe. The NEXUS clinical trial is a phase 2, open-label clinical study designed to assess the efficacy and safety of leriglitazone in male pediatric patients with early stage cerebral X-linked adrenoleukodystrophy (cALD). The NEXUS study recruits cALD patients…

#GivingTuesdayNow is May 5, 2020

Join the Global Day of Giving and Unity! #GivingTuesdayNow is set to take place on May 5, 2020 as an emergency response to the unprecedented need caused by COVID-19. The day is designed to drive an influx of generosity, citizen engagement, business and philanthropy activation, and support for communities and…

A Message about Safety and COVID-19

March 2020  Dear ULF Community,  On behalf of the Board of Directors, Medical and Scientific Advisory Board, and the staff of the ULF, please know that we are following the developments of COVID-19 and feel the concerns of our community. At this time, all we can offer is advice on…

A Letter from the ULF President

Dear Friends and Supporters of the United Leukodystrophy Foundation,  As the President of the ULF I am excited to talk to you about the many changes that are taking place as we build the future of the Foundation. In the past year, we’ve added seven new members to our board…

Embolden Study for MLD

Worldwide, MLD occurs in 1 in 40,000 people, primarily children.  Early symptoms of MLD include trouble walking, impaired speech, and muscle weakness. The Embolden Study is conducting research for infants and children born with metachromatic leukodystrophy. Study overview: The Embolden Study is evaluating the safety and effects of a study drug on…

Magical Memories Disney Raffle 2019

Buy tickets for a chance to win a Disney vacation for 4! Support the United Leukodystrophy Foundation with the purchase of a Magical Memories Disney Raffle ticket. The winner of the raffle will receive $1,050 in Disney gift cards redeemable toward admission, food or souvenirs; 4-night stay in one standard…

2018 Benefit Drawing

The time has come once again for the United Leukodystrophy Foundation’s Annual Benefit Drawing fundraiser! Thanks to the involvement of our members, friends, and donors like you, we are able to continue to award vital funding to researchers, who strive to find new treatments for the leukodystrophies and to provide…

Leukodystrophy and genome sequencing: for genetically undiagnosed patients for the 100,000 genomes project

Henry Houlden, Professor of Neurology and Neurogenetics at the UCL Institute of Neurology and The National Hospital for Neurology and Neurosurgery, Queen Square, London is looking to collect blood samples via mail or at their London hospital. Learn more here: http://bit.ly/2w5RtSe If you are interested in participating, please contact: Henry HouldenProfessor of Neurology and…

2017 Research Grant Awardees

Every year, the ULF puts a call out to the leukodystrophy medical professional community asking for research proposals in need of funding. The number of grant applications have consistently grown in the past years, and this year was no exception. Submissions from all over the country as well as internationally…

2017 Benefit Drawing Winners

This year’s Annual ULF Benefit Drawing winners have been chosen! We had a special Halloween visitor to the office this year to pull the winning tickets: 2-year-old Clark dressed up as Carl from the movie UP! The winners are… • $500 Visa Gift Card – Patrick M. of Virginia• Rolling iPad Stand…

Dr. David Edwin

We at the ULF wish to send our sympathy to the family of one of our main contributors to our annual ULF family conference who passed away in June. His obituary is below. Dr. Edwin has been a contributor addressing the psychological needs of our families and how they can cope with…

5K & Volleyball Fundraisers

The United Leukodystrophy Foundation sends out a great big THANK YOU to Debbie & Pat Sinnott and Chris & Megan Korth for hosting recent fundraisers to benefit the ULF! Both in Nebraska, the Sinnott Sand Bar ran its annual volleyball tournament, and the Korths presented the 3rd Annual Paul Korth Memorial…

Michelle Fingeroot

It is with saddened hearts that we share the news that our dear friend and ULF Board Member Michelle Fingeroot passed away on June 16th after a long and brave battle against breast cancer. Our condolences go out to our Board Member Alan Fingeroot and his family. Michelle will be deeply…

New MSAB Members Announced

The United Leukodystrophy Foundation is pleased to announce the addition of four new members to its Medical and Scientific Advisory Board. Their involvement will expand the reach of the ULF, benefit research, and assist patient families: –  Genevieve Bernard, M.D., FRCPC with McGill University –  Joshua Bonkowsky, M.D., Ph.D. with University of Utah School of…

2017 ULF Grant Cycle Now Open

The United Leukodystrophy Foundation is soliciting grant applications to support research in the leukodystrophies. Applications involving any of the leukodystrophies with budgets up to $30,000 (plus up to 10% indirect costs) will be accepted from June 1 through October 2, 2017. The ULF Medical and Scientific Advisory Board will review…

Promising New Drug

An exciting new drug has been developed by Northwestern University scientists and approved by the FDA. Although the focus is cancer, this article states that “the new drug is able to cross the challenging blood-brain barrier” and “can be applied to other types of neurological diseases.” https://news.northwestern.edu/stories/2017/may/spherical-nucleic-acid-drug-human-brain-cancer-glioblastoma/

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