Liz served as a market analyst on a government funded grant at the University at Buffalo after graduating with her MBA in 2008. There, she worked with companies such as Black and Decker, Tupperware, and Whirlpool to help make products more usable and accessible for people with disabilities and the elderly. From there she became the Director of Communications for a Roman Catholic parish and school that served over 5,000 families, working on both internal and external communications, branding, and redesign of their website. Both she and her husband have been on mission trips to Nicaragua and Kenya, which inspired them to adopt the Vincentian way of life – simplicity and service to the poor and most vulnerable. Liz is currently a stay at home mom and serves as the English language editor of famvin.org, which publishes daily news, reflections and current events of the Vincentian family around the world. Her son Owen was diagnosed with PURA Syndrome in 2019 at the age of 2. Owen loves spending time with his family, playing peek-a-boo, and listening to music. Liz feels like the PURA family is an extension of her own and is looking forward to continuing to serve them in whatever way she can. She lives in Buffalo, New York, USA with her husband Matt, daughter and three sons.

Eva and her husband Dale (who is an archaeologist) live outside St. Louis, MO and are the parents of Mark, William, and Flora. William was diagnosed with a 5q31.3 microdeletion in 2015 at the age of 3. While William doesn’t have an official PURA diagnosis, he shares many similarities and a few PURA researchers have expressed that his deletion may end up providing clues about additional genes that PURA needs to function. The Tucker family is grateful for the connection and friendship they’ve found in the PURA Syndrome community.

Since graduating with a graphic design degree from University of Missouri in 2007, Eva has built a home-based business that has allowed her the flexibility to build a career in digital technology while also managing caregiving responsibilities over the years and supporting organizations important to her. She is currently serving in a Director of Marketing role for iSelect Fund, a venture capital firm investing in food, agriculture, and health technologies to reduce healthcare costs and create a more nutritious and sustainable food system. For over a decade, she has volunteered as an advocate with the Alzheimer’s Association, advocating for legislation that supports people with dementia and their caregivers, as well as funding increases for research through NIH. She is an advisory board member for the POW/MIA Museum in Jefferson Barracks, and long-time Lean In Network Leader — a global peer mentoring group that helps women develop leadership skills and promotes equality.

Damon holds a degree in Electronics Technology, having worked at his current employer for 27 years. In this role, he coordinates and manages complex projects in the electric utility industry. Damon is a strong believer in giving back to the community. He is active in his church, where he is an Elder and serves on the Church Session, which governs the operations of the church. In this role, Damon is currently in charge of the Buildings and Grounds operations and budget and helps create the overall church budget.  He also supports the non-profits U.R. Our Hope (rare and undiagnosed conditions), as well as T and C Miracle League, where his son Owen plays baseball as a Texas Ranger. Owen was diagnosed with PURA syndrome in 2014, at the age of 12. Damon is passionate about bringing families with rare genetic conditions together, and hopes to meet all the PURA syndrome families in person one day. Damon lives in Texas (USA), with his wife Amy, son Owen and dogs, Ruby and Anna.

Nancy has had a long career in food and beverage and event planning. She is the former Director of Food & Beverage at The Metropolitan Museum of Art and Lincoln Center in New York City and assisted in the food & beverage management of major sporting events including the U.S. Open. In 2001 she moved to Boston to join Harvard Business School as the Director of Special Events. She officially retired in 2014 but continues to do projects for Harvard and private clients. Nancy now lives on Cape Cod with her husband Carlo, and Jasper, her beloved bloodhound. In addition to her projects, Nancy loves to garden and being part of the PURA Community.

Eva Feder Kittay is Distinguished Professor Emeritus of Philosophy and formerly Senior Fellow, Center for Medical Humanities, Compassionate Care, and Bioethics at Stony Brook University. She is the mother of a woman with PURA syndrome. She has authored and edited books, as well as written numerous articles, on feminist philosophy, care ethics and disability theory.  She is a co-winner of the APA and Phi Beta Kappa Leibowitz Award and has an Guggenheim and NEH Fellowship.  Her latest book is Learning From My Daughter: Valuing Disabled Minds and Matters of Care (Oxford University Press, 2018), which won the PROSE award from the Association of American Publishers for the best book in philosophy in 2019.

Kevin got his Bachelors Degree in Business Administration from Buffalo State University. He started his investment license career 13 years ago as a Licensed Banker for Key Bank. He holds the following professional licenses as a practicing financial advisor: CFP, ChFC, series 6, 7, 63, 66 and life/accident/health. In 2019, he transitioned to a Private Client Advisor with Key Investment Services where he currently leads a team covering four branches across the Western New York market. For the last four years he has been on the local Amherst Youth Basketball (AYB) board, running both the Girls 3/4 and Girls 5/6 grade level programs. He also coaches a team at both levels and sits on the Executive Committee which votes on any league wide issues. Within AYB, he started a partnership with a local youth wheelchair basketball league where they introduce and integrate wheelchair basketball with the AYB kids along with raise money annually to support the wheelchair league. In his free time besides spending time with his wife and two daughters, he has found joy in training for extreme endurance events to raise money for PURA Syndrome over the past two years.

Jim received his M.S. in Natural Sciences at the State University of New York at Buffalo while working at Roswell Park Cancer Institute, and his B.S. in Biology, also in his hometown at SUNY Buffalo. Jim’s primary training is in molecular biology, beginning his 20+ year tenure at Oregon Health & Science University (OHSU) in Portland, Oregon, USA. He worked “at the bench” in the Dermatology Research Division where he studied biochemical pathways involved in dermatological and head and neck cancers for more than 12 years. From there he moved on to the OHSU Knight BioLibrary; a university-wide human tissue biorepository, to set up and manage a small team which continues to support scientists who seek valuable specimens for their research.

Currently, Jim works in OHSU’s Technology Transfer Department as an Agreements Manager, where he negotiates agreements between OHSU scientists and their industry and academic partners, protecting their interests in new intellectual property and facilitating the ongoing and far-reaching collaborative environment at OHSU. Gardening, pinochle, camping, and tending to his animals Blue (horse), Jack (mutt), and Boba (St. Bernard) are a few things that occupy his time when away from the office.