January 5, 2023

Meet Gabe! January 2023 Happy New Year from Yaya Foundation for 4H Leukodystrophy! One of our goals for 2023 is to highlight the voices of our community each month. We…

November 27, 2022

This handsome guy hails from the United Kingdom and was diagnosed with 4H Leukodystrophy (4HL) less than one year ago. Hear from his amazing mom, Kerrie, about their journey with…

November 21, 2022

Looking back on 2022, I am so proud of all the Yaya Foundation has accomplished. We’ve enabled critical breakthroughs in 4H Leukodystrophy (4HL) research through our 4HL Collaboration Network initiative,…

November 9, 2022

We were so excited to meet our first baby, Alexis Mariana, December 2017. She was born term and without complications. She met all her milestones rolling, sitting up, crawling, and walking all within the expected timeframes.

October 28, 2022

On a cold and blustery Chicago morning, I received a phone call that would change the fate of my family forever. Just a few days earlier, my son Joshua had…

September 16, 2022

Learning To Soar With My Superhero 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…

September 7, 2022

Following two highly impactful years at the Yaya Foundation, it is bittersweet to share that Christina Butterworth is transitioning from her position as the Yaya Foundation’s Executive Director. Unexpected life…

August 30, 2022

In this #4HLFamilies call, 3 parents of children affected by 4H (POLR3-Related) Leukodystrophy share their children’s and families’ stories. They discuss the stories of their diagnoses, challenges and successes, and…

June 30, 2022

In June 2022, the Yaya Foundation for 4H Leukodystrophy sponsored several 4H-specific presentations at the United Leukodystrophy Conference in Chicago, IL. Several affected families, a variety of researchers and clinicians,…