Board of Directors

Jeri Kubicki serves as President of the Lowe Syndrome Association and has been a member of the Board of Directors since 2015. She previously served as Vice President, guiding the association’s research and clinical priorities. With a background in healthcare policy and corporate leadership at UnitedHealth Group, the National Association of Manufacturers, and NCR Corporation, Jeri brings strategic experience to her advocacy work. Based in Cincinnati, she is also a chef instructor who teaches kids healthy cooking and a certified integrative nutrition coach passionate about wellness and inclusion for children with disabilities.

Corina (Cori) DeGori has been a member of the LSA board since 2019, and an LSA member since 2001, when her son Matthew was diagnosed with Lowe syndrome. Cori lives in NY, on Long Island with her husband Vinny and son Matthew who is 20 years old. She also has a son Michael, age 26, who currently resides in Queens, NY.

Cori is a Registered Nurse, with a Master’s degree in Public Health administration and currently works part time as a clinical manager at Montefiore Medical Center/Albert Einstein College of Medicine in Bronx, NY. Her work has increasingly become more involved in the medication protocols of clinical trials, which she currently oversees, allowing her to be more involved in the medical research world. She participates in many of the inhouse conferences pertaining to current research and participates in Rare Disease Day annually. Her passion and interest remains with medical research of Lowe Syndrome. She also plays an active role and is a board member in her local SEPTA organization with a strong role as a parent advocate.

Clare Gromoll serves as Pastor of St. Croix United Church in Bayport, MN. Her work involves strategic leadership, public speaking, careful listening, building community, and collaborating with local partners toward social justice. Clare graduated from United Theological Seminary of the Twin Cities and was ordained in 2014. Before seminary, she worked in year-round outdoor ministry and as a bilingual public school teacher in Texas and Wisconsin.

Clare enjoys time with her two young sons (Sam who has Lowe, and Jonah), aerobic exercise, reading, decluttering, and visiting family in northern Wisconsin. She describes herself as optimistic, curious, honest, bold and appreciative. As an at-large LSA board member, Clare enjoys serving as co-admin of our LSA Community (on Facebook), co-facilitating monthly LSA Caregiver Support Zoom meetings, and sending birthday cards to all our boys and men who navigate life with Lowe syndrome.

Terry Johnson joins the Board bringing a career of leadership across the military, retail, and public service. He currently serves as Executive Director of the McEachern Endowment Fund and has also served on Planning & Zoning Commissions for multiple municipalities, holding advanced degrees in Leadership, Business Administration, and Public Administration. Terry is the father of Matthew and Andrew (Andy), who has Lowe syndrome, and the Johnson family has attended nine LSA Conferences together. Terry now serves as Treasurer, leading the development of LSA’s Research Endowment Fund and Director Endowment Fund to help sustain the organization’s work for years to come.

Laura Kim was born and raised in the San Francisco Bay Area. She attended the University of Southern California and received a B.A. in Communications. After a 20-year career in marketing and corporate communications, she pursued a passion for sharing knowledge where she taught piano to young children while she completed an M.S. in Education from Mount St. Mary’s University.

A few months after her son was born in 2019, he was diagnosed with Lowe Syndrome. She immersed herself in learning more about this rare condition and reading about families with children with special needs. She has become an avid advocate for her son’s needs, medically, mentally, therapeutically, and holistically. She strongly believes that education and advocacy for all children’s needs is critical to their long-term health, success, and happiness. She currently resides in Los Angeles, California with her son Ewan, husband Fitz, and Boston Terrier Brutus.

John Macdonald has been a member of the LSA Board since 2004. John and his wife, Ann, are the proud parents of their Lowe syndrome son, Dickson, and their daughter Katie. Still practicing law as a commercial litigator for 44 years in Jacksonville, Florida, he has always been active in charitable causes, having served as a past President of his local chapter of the Leukemia and Lymphoma Society, and most recently as the President of Dickson’s special needs school, overseeing a $10.5 million capital campaign which funded a virtual quadrupling of the School’s facilities. A veteran of the nuclear submarine service in the 1970’s, John remains an avid sailor but tries to ride his bicycle as many miles as necessary to justify a robust appetite.

A seasoned event professional, Amy is VP of Events at The Information, where she produces high-profile technology conferences and executive gatherings. Earlier in her career, she spent a decade working in finance in New York City and San Francisco. Beyond her career, Amy devotes much of her free time to service, holding leadership and volunteer roles with the Junior League of San Francisco and the National Charity League, where she helped raise funds for the pediatric cancer clinic at her local hospital. Amy lives in Ventura, California with her husband, Mark, and their 6-year-old son, Scott, who was diagnosed with Lowe syndrome in 2019. Scott’s older brothers, Matt and Jack, are nearby, soon to be finishing college.

Barry Ross Rinehart is the Global Creative Director for the International digital business transformation company Genpact. He is a non-parent LSA Board Member since 2017. He was also a former Board Member of the Joel Haiti Foundation, International Rett Syndrome Foundation, and International Rett Syndrome Association (and the Executive Director of the IRSA for five years where he focused on fundraising for research, family support, and awareness). Barry lives in Boca Raton, Florida with his wife Claire. Barry is a big believer in Gandhi’s call to action, “Be the change you want to see in the world.”

Lisa Waldbaum has been a member of the LSA Board of Directors since 2012, serving as President and Board Chair from 2016 to 2022. A native New Yorker, Lisa lives in Solon, OH with her husband Adam and three boys; Josh, Sam and Alex, the youngest born with Lowe syndrome. Lisa works in property management and real estate development for her family business. In addition, she recently started an egg farming business with her youngest son in an effort to develop his education, enthusiasm and zest for life. Lisa is a champion of her local Friendship Circle Cleveland chapter, where typical teenagers engage with special needs kids. She and her husband were honored by Friendship Circle for their efforts in 2016.