The Yaya Foundation for 4H Leukodystrophy was founded by parents of children with 4H Leukodystrophy (also known as POLR3-Related Leukodystrophy) and their friends. After our children were diagnosed, we all shared similar struggles, searching for resources, information, and better care. We were all dismayed that there was no organized effort to advance research and unlock a cure for 4H. So we decided to launch such an effort ourself.
The Yaya Foundation for 4H Leukodystrophy is the only organization in the world fighting for children with 4H Leukodystrophy. We aim to do that by building an ecosystem of patients, families, researchers, clinicians, scientific experts, and supporters in order to:
- Accelerate and support research that will help better understand 4H Leukodystrophy, develop therapies that will help patients with 4H Leukodystrophy, and find a cure;
- Provide educational and emotional support to patients and families affected by 4H Leukodystrophy; and
- Raise awareness of 4H Leukodystrophy.
Gabe Bassin is an experienced hedge fund trader, investor, and advisor. Gabe is currently an angel investor and and start-up advisor helping small businesses with strategy, financing, and business development. He also co-founded and serves as co-CEO of Minneapolis Hotel Managers, which operates hospitality assets in the Twin Cities. Prior to this, he was a partner and head of trading at Newland Capital Management, a long/short hedge fund in New York. Gabe and his wife, Allison, who has extensive biotech experience as associate general counsel of Flatiron Health, live together in New York.
June Garber Cheng
Zhu “June” Garber Cheng is a lawyer and Yaya’s mother. June is currently an immigration lawyer at Fredrikson & Byron, a leading law firm in Minneapolis. Before moving to Minnesota, June grew up in Beijing and studied in Shanghai. June was and is Yaya’s strongest advocate and is dedicated to supporting other children like Yaya and other families whose lives are impacted by 4H Leukodystrophy. June lives with her husband, Ron, and son, Ilan, in Minneapolis.
Christopher Cleary is a business and healthcare leader. Chris is currently the Vice President of Corporate Development at Medtronic, the world’s largest medical technology, services, and solutions company. After holding senior positions at GE Capital and Alesia Capital Services, he takes great satisfaction in having gravitated to the healthcare business and having the opportunity to help patients receive the best possible care. Chris lives with his wife, Marcia, in Minneapolis.
Marcia Cleary, R.N.
Marcia Cleary is a business and healthcare leader. After years in the telecommunications industry, Marcia’s passion for caring for others led her to pursue a career in nursing, and she subsequently obtained her RN license in New York and now practices in Minneapolis. Marcia lives with her husband, Chris, in Minneapolis.
Ron Garber is a mergers and acquisitions lawyer and is Yaya’s father. Ron is currently M&A counsel at Medtronic, the world’s largest medical technology, services, and solutions company, and was previously a partner at Fredrikson & Byron, a leading law firm in Minneapolis. In addition to being a proud father, Ron feels privileged to have met so many other children with 4H Leukodystrophy and their families, as well doctors, scientists, and students working to help them, and is dedicated to supporting their efforts. Ron lives with his wife, June, and son, Ilan, in Minneapolis.
Daniel Grossman, M.D.
Daniel Grossman is an emergency medicine physician and business leader. Daniel is currently Chief Medical Officer at Best Buy, where he is responsible for providing clinical leadership and guiding strategy and corporate development for Best Buy Health. He practices Emergency Medicine at Mayo Clinic in Rochester, Minnesota and is an Assistant Professor in Emergency Medicine at Mayo Clinic College of Medicine and Science. He has also held senior positions at Bright Health and Medtronic and is passionate about improving healthcare for underserved populations. Daniel lives in Minneapolis.
Sol Lieberman is a journalist and non-profit leader. Sol is the President of Venn Innovations, a non-profit organization dedicated to improving political discourse in the United States. He has also held senior positions at Better Government Association and Intrinsic Schools and is committed to helping young people reach their potential. Sol lives with his wife, Gabi, and their two children, in Chicago.
Rachel Schonbachler is a committed rare disease advocate and mother of three lovely children, one of whom has been diagnosed with 4H Leukodystrophy. Rachel is the co-founder of Asher’s Army, through which she and her family have raised significant funds that have been deployed to support 4H research. Rachel is committed to creating a better future for her son and other kids like him. Rachel lives with her husband, Eric, and their three children, in Heppner, Oregon.
Debbie is a committed rare disease advocate and the mother of two lovely children, one of whom has been diagnosed with 4H Leukodystrophy. After her daughter was first diagnosed, Debbie felt compelled to “do something!” and, together with her husband, launched Fore for 4H, a non-profit that holds an annual golf outing fundraiser in the Cleveland area and the first known organized fundraising effort dedicated exclusively to 4H Leukodystrophy. Debbie lives with her husband, Kurt, and their two children, in Brunswick, Ohio.
Kurt has been in the Fastener industry for nearly 30 years and is also a musician and committed rare disease advocate, as well as the father of two lovely children, one of whom has been diagnosed with 4H Leukodystrophy. Kurt currently works at Endries International, which has been delivering world class products and services in the Fastener industry for over 45 years. After his daughter was first diagnosed, Kurt felt compelled to “do something!” and, together with his wife, launched Fore for 4H, a non-profit that holds an annual golf outing fundraiser in the Cleveland area and the first known organized fundraising effort dedicated exclusively to 4H Leukodystrophy. Kurt lives with his wife, Debbie, and their two children, in Brunswick, Ohio.