Taking Care of Yourself When Taking Care of Others
from BlueCross BlueShield of Illinois Look around and you’ll see caregivers. In the U.S., 1 in 3 adults give care to others. Caregivers may be taking care of elderly parents, a sick spouse or a disabled child. Being a caregiver can be very stressful and demanding. It can even lead…
In Memorial or Honorarium – April 2020
The ULF received donations in memorial or honorarium for the following during the month of April 2020. 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 Ryan D. Miller: Ellen Dodaro Daxton Wallace: Sandy Wallace…
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…
Sam Buck, VWM
“Until February 2013, our 2-year-old son Sam was completely normal child, no problems with his pregnancy or birth, he met every milestone, and overall was healthy. He would trip and fall a lot, but we never thought anything of it. Then on February 23, 2013, Sam was playing on our…
Addy Moss, 4H Syndrome
by Jen Moss, originally posted here: Mountain Parent Our story pivots around one precise moment. A phone call one afternoon in May 2016 almost four years ago. Every life event before and every moment since is redefined now in relation to the information we received that afternoon. The rest of…
Life During the Covid-19 Crisis: A Chat with Dr. Bernard
by The Montreal Children’s Hospital Foundation Dr. Geneviève Bernard is a world-renowned expert on genetically determined white matter disorders, called leukodystrophies. Patients are referred to her clinic from all over the world. She brings much comfort to families everywhere who are suffering from these diseases for which the vast majority…
In Memorial or Honorarium – March 2020
The ULF received donations in memorial or honorarium for the following during the month of March 2020. 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 Jarod Barndollar: Roger & Donna Barndollar Megan Early: Chris…
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…
In Memorial or Honorarium – February 2020
The ULF received donations in memorial or honorarium for the following during the month of February 2020. 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 Shayla Arrotta: Taytum Arrotta The Brazeal Family: Patrick & Pamela Mumey …
Henry Crawley, PMLD
by David Crawley My son Henry is our first born, next to his beautiful and helpful 4 year old sister Rosemary. Henry is 5 years old (about to be 6) and he’s a happy, thoughtful, wonderful, kind, and loving little boy. He is very curious, imaginative, and funny. Every day…
Andy Fingeroot, Canavan
by Alan Fingeroot Our son Andy died of Canavan disease when he was 15 years old. This is our story. No parent should have to endure the heartache of a child affected with a Jewish genetic disease. These diseases are preventable if you know your carrier status before you get…
Nicki Jorgensen, ALD
by Annika Jorgensen I am his mother (from Sweden) and he has an American father, Marcy. We have two daughters Amanda and Johanna, who are both older than Nicki. We were divorced before Nicki turned ill and his father lives in the States. When we were married, I lived in…
Kristy Kintner, MLD
by Colleen Kintner Kristy was 6 years of age when she was diagnosed with Metachromatic Leukodystrophy. We felt very lost and alone. We were blessed to have a quick diagnosis because Kristy’s pediatrician had studied with one of the experts here in California at UCLA. Bill looked up articles about leukodystrophy and…
Tickets for the 3rd Annual Magical Memories Disney Raffle are now available!
Tickets are $50 each, and only 500 tickets will be sold. You are welcome to purchase as many tickets as you would like. Payment must be received by 12 PM Noon CST on Friday, March 27th, 2020. The drawing will be streamed on Facebook Live at 2 PM CST on…
In Memorial or Honorarium – January 2020
The ULF received donations in memorial or honorarium for the following during the month of January 2020. 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 Sheryl Berger: Mr. & Mrs. John and Neva…
In Memorial or Honorarium – December 2019
The ULF received donations in memorial or honorarium for the following during the month of December 2019. 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 William Armstrong: Steven and Fortuna Scheige The Backenson Family: Thomas and…
In Memorial or Honorarium – November 2019
The ULF received donations in memorial or honorarium for the following during the month of November 2019. 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 Will Armstrong: Stuart and Brenda Bates Asher Fleming Bloxom: Elizabeth Daniels,…
In Memorial or Honorarium – October 2019
The ULF received donations in memorial or honorarium for the following during the month of October 2019. 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: Brownie’s Pro and Sports Hobbies Shop Tori Brown: William Neville and…
In Memorial or Honorarium – October 2019
The ULF received donations in memorial or honorarium for the following during the month of October 2019. 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 Gregory Brown: Brownie’s Pro and Sports Hobbies Shop Tori Brown: William Neville and…
In Memorial or Honorarium – September 2019
The ULF received donations in memorial or honorarium for the following during the month of September 2019. 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 Alyssa Beck: Linda Beck Shawn Blake: Nick and Jill Siragusa Clark…
In Memorial or Honorarium – September 2019
The ULF received donations in memorial or honorarium for the following during the month of September 2019. 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 Alyssa Beck: Linda Beck Shawn Blake: Nick and Jill Siragusa Clark Cutler: Scott Beck,…
In Memorial or Honorarium – August 2019
The ULF received donations in memorial or honorarium for the following during the month of August 2019. 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 Gregory Brown: Brownie’s Pro and Sports Hobbies Shop, James and…
In Memorial or Honorarium – July 2019
The ULF received donations in memorial or honorarium for the following during the month of July 2019. 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 Neil Kushnick: Jerome and Nancy Kushnick Alex Leef: Forrest Leef…