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 & Catherine Early IN MEMORY …
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 staying healthy and safe during …
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 of directors. These new additions …
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 Zane Dial: Mr. & Mrs. Michael …
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 he teaches me how to …
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 pregnant. Andy was a beautiful …
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 the States for 10 years. …
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 the name Dr. Hugo Moser …
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 the 27th. Follow us on …
Tickets for the 3rd Annual Magical Memories Disney Raffle are now available! Read More »
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 Mendiola Steven Bomze: Tolleson Wealth Management …
