Bohring-Opitz Syndrome Foundation, Inc.
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About

Helping Others. Meaningful Work Relationships. Integrity. Education.

Goals & Objectives

We exist to:

  • Help families and patients affected by BOS through family assistance programs

  • Support research that increases the medical community’s knowledge about BOS and its best treatments

  • Teach and share knowledge about BOS, and its best practices and treatments

  • Increase a sense of community surrounding BOS

 

Get in touch

Do you have questions, need support, new to the BOS family? No matter what your concern or reason we are here to help. Please feel free to contact us by email and one of our Board Members will be in contact within 3 business days.

info@bos-foundation.org

 
 

Our Team

 
 

Chair

Anita Ross

Anita is the younger sister of Rosemary Ross (29), who was diagnosed with Bohring Opitz Syndrome in the summer of 2015. She lives just outside of Philadelphia with her parents and sister. Anita loves to spend her spare time with her friends and huge Italian family. She currently holds a Bachelors of Health Science and is studying to earn a Doctoral degree in Occupational Therapy in May 2019. She has always had a passion to promote independence for children and individuals with disabilities and to enable them to live their fullest and best life! As a student, she is constantly learning about new information/resources and is motivated to work to her fullest potential. As a sister and family member, she is inspired to provide support to the BOS foundation and community. She is always willing to answer any questions or simply chat about her experiences as a sibling to Rosemary! She encourages others to reach out to her as she would love to hear a little more about all of you!

anita@bos-foundation.org

 
 

 
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Vice Chair

Taylor Gurganus

Taylor Gurganus was born and raised in Northeastern North Carolina. She holds a B.S. in Elementary Education from East Carolina University with a Middle Grades Mathematics add-on. Taylor currently lives in Elizabeth City with her husband, Chad and their two daughters. Taylor has always had the passion to better the lives of children. Taylor has extensive first hand experience working with children who have mild to severe disabilities. During college, Taylor worked with several children who had Down syndrome and autism. She would prepare educational lessons, assist with daily activities, and fun learning environment to improve their life skills. In 2014, Taylor had her first daughter, Talynn. Talynn was born with a rare genetic syndrome called Bohring-Opitz Syndrome. Taylor now works as an Infant Toddler Family Specialist and has become very familiar with numerous therapy techniques that support children with developmental delays and/or health issues. Taylor Gurganus is a hard worker with an outgoing personality. She will go above and beyond to make sure all children have a positive learning experience.

taylor@bos-foundation.org

 
 

 
 

Treasurer

Tony Nguyen

Tony Nguyen was born and raised in Southern California. He has a B.S in Biological Sciences from the University of California, Irvine. Tony is a dynamic business development executive with extensive management experience in rapid-high growth companies in an ever-changing environment. Little did he know that his aptitude with ever-changing environments in his work life would transfer into his personal life. His daughter Jemma was diagnosed with Bohring-Optiz Syndrome shortly after her first birthday and a roller coaster first year of life. After Jemma’s diagnosis, Tony and his wife made it their mission to spread BOS awareness amongst their family, friends, colleagues and community. They understand the importance BOS awareness and are grateful that Tony is on the Board for the Bohring-Optiz Syndrome Foundation in order to continue the mission on a grander scale. He believes in the Foundation’s goals and objectives and is proud to be a part of it. Tony looks forward to continue growing the BOS Foundation with his fellow board members as well as with BOS advocates from all around the world.

tony@bos-foundation.org

 

 

Secretary

Lori Fulton

Lori resides in the suburbs of Boston and is the mother of two sons: Chris (age 22) and Daniel (age 19). When Daniel was 1 ½ years old, he was diagnosed with a metabolic disease. When he was 18, an astute geneticist guessed that the diagnosis was wrong and asked the family to submit to whole exome gene testing. As a result, Daniel was re-diagnosed with Bohring-Opitz Syndrome as an 18-year old. Lori received her bachelor’s degree in psychology from Duke University and her law degree with honors from University of Georgia. She also received a master’s degree in educational psychology from Loyola University Chicago. Lori is a member of both the Illinois and Massachusetts Bars. After working as a business lawyer in Chicago, Lori left to care for her children full time. Lori is grateful to have finally found the right “home” for her family in the BOS community. Through her work with the BOS Foundation, she seeks to provide support to other BOS families.

lori@bos-foundation.org