You may contact any of the Board Members below by visiting our Contact page.
Newport, Rhode Island
Joe joined ANN as a lifetime member in 2007 after attending his first conference. Since then he has become interested in nystagmus research, and as a member of the board of directors has organized multiple international nystagmus research workshops. He himself is gifted with infantile nystagmus, which provides endless wonder to those he meets.
Joe earned a Bachelor’s and a Master’s degree in mechanical engineering and a Ph.D. in applied mechanics from the University of Connecticut (go Huskies!). By day he is a mild-mannered scientist for the U.S. Navy. He currently works at the Naval Undersea Warfare Center in Newport, RI. He performs basic research into the response of structures to underwater explosions. This mainly involves extensive computational simulations, but he has been known to blow things up underwater from time to time.
San Leandro, California
Evelyn, her husband, and four children live in San Leandro, CA. Her oldest and youngest sons both have infantile nystagmus. Evelyn and her son Juan attended the 2011 and 2013 ANN conferences. Evelyn holds a degree in biology and worked in the field of cytogenetics for nearly a decade. She returned to graduate school and received a M.Div. degree. She then served for eight years as the Director of Youth and Young Adult Ministry for the Diocese of Oakland. Currently, she serves as a fundraiser and event planner supporting a number of nonprofit and community organizations. She is also a City of San Leandro Recreation and Parks Commissioner.
Evelyn brings tremendous experience as a project manager in the non-profit and public sector, as well as extensive experience in non-profit fundraising and management.
Michele was born with nystagmus and grew up knowing very little about it. She became more interested in learning about nystagmus when her second child was born with it. She stumbled upon ANN doing a google search and attended her first conference in 2011, which was a life changing experience. She has attended multiple conferences since then and has formed some great friendships as a member of ANN.
Michele has a B.S in Business Administration from the University of Delaware and a Master’s degree in Education of Middle School Math. She currently teaches sixth grade math in Bridgewater, NJ.
Domenica joined the ANN board in 2019. Her oldest child was born with infantile nystagmus. After finding ANN on social media, it was evident to her that this is a strong rooted community in which her family wanted to belong.
Domenica brings a background of nonprofit board service and project management proficiency. She is currently a Director in Operations for a nonprofit health plan in New York state, with 7 years of health insurance experience. She also has two Master’s degrees in Education. She and her husband live in upstate New York with their two children and two energetic pups.
Roz is currently a retired Benefits and Learning Consultant. Teaching, facilitation and training are her passions. She has used her skills internationally and feels honored to have done so. She is married with two children. Her interests are reading, writing, community outreach and involvement with her church community.
Roz is currently working on a series of children’s books aimed at those with nystagmus.
Frankie was born with congenital nystagmus and is the creator of the Dancing Eyes Podcast, a podcast in which he interviews others who were born with the condition. Throughout the duration of the podcast’s run, Frankie interviewed over 25 people with nystagmus as well as parents of children who were born with it.
Frankie joined the ANN board in 2025 and currently lives in NYC where he is working on creative ventures including stand up comedy and script writing.
Jen found ANN on Facebook while looking for treatment options outside of Canada for her oldest child who has infantile nystagmus. Jen’s first conference was in 2021 (virtually). Jen then volunteered to assist with the 2023 and 2025 conferences – thankful for the connections she and her oldest made through ANN.
Jen is a nurse and lives in Ottawa with her two children.
Karen joined the ANN Board in 2021. Karen, her husband, son, and daughter first attended ANN’S 2007 Conference to learn more about infantile nystagmus for her son, who is affected by the condition. Karen and her family live in Augusta, Georgia.
Karen brings varied experience as an engineer to include permitting/ licensing, managing various projects and programs, and conducting assessments and analysis. Her current work with the U.S. Department of Energy involves oversight of the contractors performing infrastructure and environmental projects. Karen holds a Bachelor’s in Environmental Engineering and a Master’s in Systems Engineering. Her other interests are mentoring and coaching youth pursuing STEM fields and volunteering as a Special Projects Lead with her church.
Greg joined the ANN Board of Directors in 2021. He learned of ANN after his children were born with infantile nystagmus. After attending several in-person conferences, and seeing the positive impact it had on his kids, Greg volunteered to assist with the virtual conference in 2021.
Greg, his wife, and two children live in Richmond, VA. He works as a mortgage sales manager for a Fortune 500 company. In his free time, he enjoys reading, biking, and traveling.
Jeff joined the ANN Board after helping organize the 2023 Conference. His first conference was in 2019. Jeff credits ANN for helping him discover amazing treatments for his own nystagmus (INS).
Jeff earned a Bachelor’s degree in Psychology from Washington and Jefferson College and has owned and managed several retail businesses. Jeff currently works in real estate and has helped sell hundreds of homes and businesses. Jeff does drive even though he was told he never would. He enjoys encouraging others to reach for their dreams and succeed.
Leslie joined the ANN Board after helping redesign the nystagmus.org website in 2024. Leslie and her son, Drew, both have nystagmus and have enjoyed attending conferences and meeting and supporting others with nystagmus.
Leslie earned undergraduate degrees from Purdue University in Computer Graphics Technology and Communications as well as a Masters degree in Organizational Psychology. She has worked in marketing for over twenty years, spending most of that time in web development and project management. Currently, Leslie holds a position at Purdue University as the Assistant Director of Marketing and Communications for the Office of Future Engineers.
