Galactosemia Foundation Inc
Galactosemia Foundation Inc. (formerly, Parents of Galactosemic Children) is a non-profit charitable organization that advocates for people with galactosemia and their families. Founded in February 1985, Galactosemia Foundation helps provide affected families information on Galactosemia and facilitates networkings between families, clinicians, and researchers.
Mission & Objectives
- To educate, support and provide advocacy for those affected by Galactosemia.
- To network with professionals to inspire the treatment and advanced research of Galactosemia
- Scott Shepard, President, firstname.lastname@example.org
- Scott Saylor, Vice-President, email@example.com
- Lisa Spiro – Treasurer, firstname.lastname@example.org
- Andrea Topper - Secretary, email@example.com
- Nicole Casale – Outreach Lead, firstname.lastname@example.org
- Seth Schwartz – Communications Lead, email@example.com
- Kellie Wilcox - Board Member, firstname.lastname@example.org
About Our Board Members
Scott Shepard is a Principal Engineer at PepsiCo. Scott works in Research and Development, creating new snack foods for the Frito-Lay division of PepsiCo, based in Plano, Texas. Scott holds a Bachelors of Science degree in Mechanical Engineering from Missouri University of Science and Technology. Scott lives near Dallas, Texas with his wife Choi, and daughters Jasmine and Olivia. Scott’s oldest daughter, Jasmine, was born in 2006 with classic galactosemia. After attending the 2010 conference in Minneapolis, Scott volunteered to help plan and execute the 2012 Conference in Dallas. Scott joined the Galactosemia Foundation board of directors in 2011 as Vice President. Scott became President of the Foundation when former President, Michelle Folwer, retired after the 2014 conference.
Scott Saylor is an Area Director of Pharmacy and Retail for Walgreens Drug Stores in Central Virginia. He has been with Walgreens for 19 years. At Walgreens Scott is responsible for overseeing 5 district and 80 stores which account for $700 million in annual revenue. Scott’s duties at Walgreens include target setting, financial oversight, local marketing and local purchasing. Scott holds a BS in Management from Gannon University along with minors in Human Resource Management and Marketing. At Gannon, Scott was also a 4 year starter on the varsity football team. Scott joined the Galactosemia Foundation board after the 2012 conference.
Scott resides in Chesterfield, Virginia with his wife Kristine, daughter Brooke and son Jake. Jake was born in 2007 with classical Galactosemia. Soon after Jake was born the Saylor’s started “Fore the Cause” and have raised more than $200000 for Galactosemia Foundation. Scott and Kristine devote a lot of time to Brooke and Jake’s sports interests. Brooke is a competitive gymnast traveling across the United States to compete. Jake plays football and wrestles. Besides rooting for his kids, Scott enjoys physical fitness including running and playing a number of sports.
Lisa Spiro is the Treasurer of the Galactosemia Foundation. She graduated from the Florida Atlantic University with her masters in accounting after obtaining her undergraduate degree in accounting from the University of South Florida. Lisa has over 20 years accounting and finance experience and currently works as a Controller for a forensic healthcare company.
Lisa lives in South Florida with her husband and three daughters. Lisa’s oldest daughter, Kayla is 23 years old and is a carrier. Her two younger daughters both have classic Galactosemia. Megan, who is 20, recently obtained her massage therapist license. Amanda is 18 and looking forward to her first year at Valencia College in Orlando.
Andrea Topper is a bi‐lingual and bi‐cultural certified social worker. She began her career while working in New York City at a not‐for‐profit law firm, Lawyers for Children; there she worked with law guardians to represent abused children in foster care. In 1995, Mrs. Topper graduated from the State University of New York in Stony Brook, where she received a Masters of Social Work degree and immediately afterwards received New York State Social Work Certification. In 1997 Mrs. Topper began employment with the Education and Assistance Corporation. EAC is a large non‐profit human service organization that serves over 33,000 people throughout Long Island and the five boroughs of New York City. EAC offers programs including many designed for children in trouble at school, children whose parents are recovering substance abusers, children dealing with sexual abuse and supervised visitation programs for children separated from their parents. All of the programs work to improve the health and emotional well-being of children, families and communities. Mrs. Topper is the mother of two teenage boys, Keith age 17 and Chris age 16, both diagnosed with galactosemia. Mr. and Mrs. Topper, along with their two sons and two puppies reside on Long Island, New York.
Nicole became a member of the Board in September of 2014. She has attended both the Dallas and Orlando conferences and is looking forward to seeing everyone again in 2016. She and her husband Nick live in Latham, NY, and have three children, Noah, Joseph, and Reagan. Joseph was born in March of 2012, and diagnosed with classic Galactosemia at 5 days old. Like many he had a rough start, contracting meningitis at 9 days old, resulting in profound hearing loss in his left ear. Today he is doing wonderfully. He is currently in an integrated preschool classroom and receives speech three times per week. Her other two children do not have Galactosemia, they may or may not be carriers.
Nicole is a financial educator and counselor at Troy Rehabilitation and Improvement Program. She received her Bachelor’s degree in Elementary Education from University at Plattsburgh, and her Masters of Science in Special Education from the University at Albany. Her hobbies include running, baking, and coming up with new and creative dairy free dishes.
Seth Schwartz joined the Galactosemia Foundation board of directors in 2014 after attending the Orlando conference. He lives in Toronto, Ontario, Canada with wife Charlotte and sons, Isaiah and Rivers. Isaiah was diagnosed with classic galactosemia in 2011 at 10 days of life. Isaiah is currently receiving occupational therapy sessions, but is otherwise in good health. Professionally, Seth is the Manager of Pharmacy Business Analytics for Shoppers Drug Mart, where he helps track the performance of the organization and its market initiatives. He holds an MBA from the University of Toronto, and a Bachelors of Engineering from the University of Waterloo.
Kellie Wilcox, and her family live in New Summerfield, Texas and have resided there for 15 years since she married her husband Jason. They have 4 children; Paden is 10 years old and their only Galactosemic, Tori is 10 years old and Blaine and Keelee are 4 years old. They also had a Classic Galactosemia son that would be 12 years old, but passed away in infancy from complications. Kellie has worked at a small credit union in Rusk, Texas, for 15 years, 7 of those as CEO. She has volunteered with the Kiwanis and other service organizations, as well as serving on the Rusk Chamber of Commerce board. She also serves on the board for Galactosemia Families of the Southern States and was one of the original founders. She spends most of her free time with her kids at either softball games or various 4H contest and most recently added gymnastics to the activity list.