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
- Kellie Wilcox - President, firstname.lastname@example.org
- Scott Saylor, Vice-President, email@example.com
- Lisa Spiro – Treasurer, firstname.lastname@example.org
- Nicole Casale – Secretary, email@example.com
- Seth Schwartz – Communications Lead, firstname.lastname@example.org
- Layne Long - Board Member at Large, email@example.com
- Cari Miller - Board Member at Large, firstname.lastname@example.org
About Our Board Members
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.
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.
Nicole joined the board in 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 joined the board in 2014 after attending the Orlando conference. He lives in Toronto, Ontario, Canada with wife Charlotte and sons, Isaiah (CG) and Rivers. Isaiah was diagnosed with classic galactosemia in 2011 at 10 days of life. Isaiah is now a very sweet young boy. He is in the developmental delay program in the Toronto district school board.
Professionally, Seth is the Director of Operations for Exzell Pharma. He has held previous roles at Shoppers Drug Mart, a major Canadian pharmacy, and IQVIA, a health information and solutions provider to the pharmaceutical industry. He holds an MBA from the University of Toronto, and a Bachelors of Engineering from the University of Waterloo.
Layne Long joined the Board in 2016 after attending several conferences and serving on the Outreach Committee after the 2012 Orlando conference. She lives in Katy, TX with her husband, James, and two children Austin and Brooke. Brooke was diagnosed with Galactosemia at 5 days old in 2006 when she contracted E-coli meningitis. She is now thriving socially. Brooke is actively taking horseback riding lessons, loves to craft and cook and has been in Girl Scouts and cheerleading. Austin is active in FFA and his high school wrestling team.
Layne has been Assistant Project Manager in the oil and gas field in Houston, TX for the last 3 years. She and James volunteer on the Transportation Committee for the Houston Livestock Show and Rodeo. She is also working on her Sign Language Interrupter Certification. When she does have a free moment, Layne enjoys reading and anything involving the outdoors.
Cari Miller joined the Board in 2017. She is Aunt to two beautiful nieces; the oldest age 11 has Classic Galactosemia, and the youngest, age 9, is a carrier for Galactosemia. Cari has been attending the Galactosemia conferences with her sister-in-law Tracey, since the 2008 conference (and they have some interesting travel stories as a result) !!! Her nieces started attending in 2012 and thoroughly enjoy their time at the conference meeting other children and participating in all of the activities. Looking for a way to give back, Cari volunteered to become an active member of the Gacatosemia Foundation and was offered a Board position in late 2017.
Cari has extensive professional experience in the healthcare arena, having developed, implemented and directed healthcare projects for more than 20 years. Her activities in the healthcare arena focus on several areas, including working with physicians, practice teams, and hospital/health systems to identify ways to improve the care they are providing to their patients, including access to care, implementation of evidence-based quality care guidelines, and overall patient satisfaction and engagement with the healthcare system. She is currently working for a large health plan with a focus on developing strategic partnerships.