In Memorial or Honorarium – September 2018
The ULF received donations in memorial or honorarium for the following during the month of September 2018. We apologize for any inadvertent omission or misspellings. Please notify us if we have made a mistake at office@ulf.org or by calling 815.748.3211. IN HONOR OF Alex Bouley: Bernard and Alice Howard Levine Elizabeth DeSpelder Rawlins: Daniel…
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…
In Memorial or Honorarium – August 2018
The ULF received donations in memorial or honorarium for the following during the month of August 2018. We apologize for any inadvertent omission or misspellings. Please notify us if we have made a mistake at office@ulf.org or by calling 815.748.3211. IN HONOR OF Gregory Brown: Michael Adamo, Theresa Hollnsteiner, Katelyn Tierney Thomas Cunningham: Sallie Griffiths Arwyn…
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…
In Memorial or Honorarium – July 2018
The ULF received donations in memorial or honorarium for the following during the month of July 2018. We apologize for any inadvertent omission or misspellings. Please notify us if we have made a mistake at office@ulf.org or by calling 815-748-3211. IN HONOR OF David Anderson: L3 Aerospace Systems Amari Ball: Ken and Diane Mobeck…
In Memorial or Honorarium – June 2018
The ULF received donations in memorial or honorarium for the following during the month of June 2018. We apologize for any inadvertent omission or misspellings. Please notify us if we have made a mistake at office@ulf.org or by calling 815-748-3211. IN HONOR OF Sam Buck: Mr. and Mrs. Randall Horton Marc D’Amico: Mr. and…
In Memorial or Honorarium – May 2018
The ULF received donations in memorial or honorarium for the following during the month of May 2018. We apologize for any inadvertent omission or misspellings. Please notify us if we have made a mistake at office@ulf.org or by calling 815-748-3211. IN HONOR OF W. Boone: Thomas Blandford, Jr. Sophie Clarke: Julia Bolton Michael Collins: Catherine…
In Memorial or Honorarium – April 2018
The ULF received donations in memorial or honorarium for the following during the month of April 2018. We apologize for any inadvertent omission or misspellings. Please notify us if we have made a mistake at office@ulf.org or by calling 815.748.3211. IN HONOR OF Asher Fleming-Bloxom: Christine Fleming-Bloxom Nana Gumbs: Thomas Blandford, Jr. Joshua Ryan…
In Memorial or Honorarium – March 2018
The ULF received donations in memorial or honorarium for the following during the month of March 2018. We apologize for any inadvertent omission or misspellings. Please notify us if we have made a mistake at office@ulf.org or by calling 815.748.3211. IN HONOR OF Linda Fleming: Carlos Diaz George Frame: Ray and Christine Moddrell Clancy…
In Memorial or Honorarium – February 2018
The ULF received donations in memorial or honorarium for the following during the month of February 2018. We apologize for any inadvertent omission or misspellings. Please notify us if we have made a mistake at office@ulf.org or by calling 815.748.3211. IN HONOR OF Carter Bowman: Katie Bowman, Ken Monahan Zane Dial: Martha Conlon Dori Greene: Andrew…
In Memorial or Honorarium – January 2018
The ULF received donations in memorial or honorarium for the following during the month of January 2018. We apologize for any inadvertent omission or misspellings. Please notify us if we have made a mistake at office@ulf.org or by calling 815.748.3211. IN HONOR OF MaryAnn Backenson: Bryon and Kathleen Backenson Asher Fleming-Bloxom: Keith Yale Ben…
Magical Memories Disney Raffle to Benefit Leukodystrophy Medical Research
Buy tickets for a chance to win a Disney vacation for 4! DEKALB, IL – February 1, 2018 – 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…
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…
In Memorial or Honorarium – December 2017
The ULF received donations in memorial or honorarium for the following during the month of December 2017. We apologize for any inadvertent omission or misspellings. Please notify us if we have made a mistake at office@ulf.org or by calling 815.748.3211. IN HONOR OF Blake Andrews: Kyle Roan Phillip Andrews: Kyle Roan Harrison Botta: Erik and…
In Memorial or Honorarium – December 2018
The ULF received donations in memorial or honorarium for the following during the month of December 2018. We apologize for any inadvertent omittance or misspellings. Please notify us if we have made a mistake at office@ulf.org or by calling 815.748.3211. IN HONOR OF Peter and Mary Ann Backenson: Thomas and Brooke Backenson…
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…
Dr. Wolfgang Koehler Wins 2017 Dr. Hugo Moser Service Award
Congratulations to Dr. Wolfgang Koehler of Fachkrankenhaus Hubertusburg gGmbH in Wormsdorf, Germany! He is the recipient of the 2017 Dr. Hugo Moser Service Award for his decades-long commitment to the United Leukodystrophy Foundation and to affected families and for his advancements in leukodystrophy research. This award was presented to Dr….
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/
35 Years of Caring, Hope, and Education
On our 35th anniversary, we are reflecting on our journey thus far and honoring all of our loved ones. By pledging $35 or more, you can help us to build a stronger foundation and extend our reach to new heights. With a flat donation or a monthly pledge, you are helping us to continue our…
ULF 2016 Research Grant Awardees
The ULF Scientific Review Committee reviewed the many, high-quality research grant applications that were submitted from around the world for ULF funding. We received 3 times as many proposals this round than last, and we appreciate all of the proposal submissions from devoted scientists. The United Leukodystrophy Foundation congratulates these…