“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 bed. He fell off and …
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 that particular day is a …
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 currently have no known cure. …
Life During the Covid-19 Crisis: A Chat with Dr. Bernard Read More »
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. …
