TSF would like to thank the Duncan and Flexer Families for their unwavering support. Organizing fundraisers is challenging, but their dedication is exemplary. Their support is vital to our mission. We also thank McCarthy Building Companies for its annual fishing tournaments, which generate funds and raise awareness. We are grateful. Duncan Family: Fishing for Ford […]
We are pleased to welcome Mr. Michael Wallace to The Snow Foundation Team. Michael’s journey with The Snow Foundation is truly heartfelt. As a former senior content producer at Children’s Hospital Los Angeles, he loved sharing patient stories that helped raise funds and awareness. During his executive MBA, Michael learned about Wolfram syndrome through the […]
We are pleased to welcome Emily Kohler, who will assist with the Wolfram syndrome Global Facebook administration and assume some of the responsibilities previously held by Pat Gibilisco. She is 27 years old and from Media, Pennsylvania. Emily was diagnosed with Wolfram syndrome on December 20, 2021, at the age of 23. Although the past […]
Pat will be stepping down from the role of Patient Administrator. We appreciate all the dedication and hard work Pat has shown during her time in this position. Pat, a pioneering figure in the Wolfram syndrome community, was the Co-Founder of the first Wolfram Syndrome Website and Family Support Group. This initiative, which she launched […]
We’re excited to announce the launch of Wolfram Rising, a private peer-led Facebook support group for young people (ages 15–30) living with Wolfram Syndrome. This group is a safe, welcoming space where you can be yourself, connect with others who truly understand what you’re going through, and share experiences, laughter, and support. Our young WS […]
Principal Investigator Dr.Benjamin Delprat, Montpellier, France With help from the WS patient community and a special shout-out to our dear friend Nufar, a list of 30 widely available and potentially therapeutic compounds was compiled to be evaluated for the potential treatment of WS. We are completing negotiations to test these compounds individually and in combination […]
Principal Investigators Dr. Lucas Fernandez Brillet, and GemaEsteban Bueno, MD, Barcelona, Spain Broad categories of neurodegenerative findings in WS have been proposed and established through prior work done by WS researchers. This project, proposed by Dr. Lucas Brillet, aims to determine in more detail the areas of the brain that are affected in WS, and […]
Principal Investigator Dr. Mariana Igoillo-Esteve, Co-Investigator Ane Olazagoitia-Garmendia, Brussels, Belgium New potential WFS1 interactors were discovered by Dr. Igoillo-Esteve in 2025. This work aims to validate the new interactome data obtained in 2025, uncover the molecular pathways in which they are involved, and characterize their roles in cellular function, ER stress, and survival. Following this […]
Principal Investigator Dr. Samagya Banskota, Boston, USA This project will attempt to make gene editing available to all WS patients who have a variant that involves a single base pair change (missense variant). Over 60% of people with WS with documented genotypes may benefit from this strategy. This approach is important because a single attempt […]
The Snow Foundation has partnered with Odylia Therapeutics to bridge the gap between preclinical/bench research and clinical trials. Odylia provides expert guidance and advice to take potential treatments from the lab to clinical trial and accelerate treatment development. We will continue to work together to forge a path forward for treatments like gene editing and […]
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