November 25, 2021

The latest #4HLFamilies call hosted by the Foundation included special guest and leading 4H Leukodystrophy expert, Dr. Genevieve Bernard. Following brief introductions by everyone, Dr. Bernard helped welcome more than twenty families to the special discussion on current 4H research, possible 4H research pathways for the future, and the spectrum of 4H phenotypes. Plenty of…

November 11, 2021

Dear Yaya Foundation Family & Friends, 2021 has been a year of action fueled by hope – your hope, and our hope that one day, every person with 4H Leukodystrophy will have the chance to live a long, healthy life. This year, the Yaya Foundation put hope in motion and invested in bringing researchers together…

October 12, 2021

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 undergone an MRI scan. While I considered the possible results, I had never thought the diagnosis could be something so terrible. A diagnosis of a…

October 12, 2021

Kora has always been a gift to her parents, starting from the moment of her arrival on December 25th. In her first few weeks of life, Kora struggled with acid reflux and major spit up. We lived by the five Ss (Swaddle, Side-stomach position, Shush, Swing, Suck) to soothe her somewhat cranky nature. Thankfully, Kora…

October 12, 2021

May 17th, 2001 was a day that changed my life forever. Julia Marie Novak was born at 6:20pm, weighing seven pounds and eleven ounces. I remember thinking to myself that seven and eleven were good luck numbers, sealing her fate of a perfect life. Eighteen months later on Christmas of 2002, my sister brought Julia…

October 12, 2021

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 moment since is redefined now in relation to the information we received that afternoon. The rest of that particular day is a blur, and yet…

September 9, 2021

The Yaya Foundation for 4H Leukodystrophy, the Research Institute of the McGill University Health Center, the Montreal Children’s Foundation and the University of Massachusetts Medical School Join Forces in a New Six-Figure Project Seeking Treatments for Children Affected by this Rare Disorder MINNEAPOLIS (September 1, 2021) — The Yaya Foundation for 4H Leukodystrophy, the world’s…

September 3, 2021

The next #4HLFamilies call hosted by the Yaya Foundation is scheduled for Sunday, September 19th at 4:00 pm ET / 1:00 pm PT. Please join us for: updates from the Foundation discussion on a variety of 4H-related topics, led by Tammy Bock to connect with others in our community Please use this link to register:…

July 27, 2021

On July 18, 2021, three parents of children affected by 4H (POLR3-Related) Leukodystrophy shared their children’s and families’ stories. They discussed the stories of their diagnoses, challenges and successes, and key choices they’ve made in their children’s medical care. Their stories highlight the broad spectrum in the effects of 4H and the resilience of our…

July 16, 2021

The Yaya Foundation hosts #4HLFamilies Zoom Hangouts bi-monthly to gather our 4H Leukodystrophy community together on a regular basis. Foundation updates and priorities are shared with families as well as engagement opportunities such as participating in research or volunteering with the foundation. Perhaps most important to these Zoom Hangouts is the chance for families affected…

June 23, 2021

Participate in Research via Data Collection The Data Collection Program is open and we invite you to participate by sharing your data, which is critical for research. When you participate in data collection, sometimes called a disease or patient registry, you’ll help accelerate research and the development of new drugs and other therapies. Collecting data is an…

May 26, 2021

On May 16th, the Yaya Foundation invited a very special guest to join the #4HLFamilies call – Dr. Nicole Wolf of the Amsterdam Leukodystrophy Center and the Amsterdam University Medical Center. Dr. Wolf is one of the world’s leading clinician scientists of 4H/POLR3-related Leukodystrophy.