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Our Team

The BOS Foundation’s Board of Directors is comprised of a dedicated group of parents, relatives and supporters who help guide the Foundation. 

Chair Taylor Gurganus, North Carolina

Vice Chair Vacant

Treasurer Vacant

Secretary  Jesa Galloway, Philadelphia


Tony Nguyen, California

Michelle Parke Doty, Kentucky

Lori Fulton, Massachusetts

Our Goals & Objectives

The Best Life for All Families Living with BOS

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

We value:

Helping Others, Meaningful Work, Relationships, Integrity, Education


We start every year off with Annual T-shirts! The t-shirt fundraiser runs the month of February, ending on February 28 (Rare Disease Day). 

We end the year with our Annual BOS Ornaments! The ornament fundraiser starts after Thanksgiving and continues while supplies last. 

Every dollar donated to the BOS Foundation goes to improving the lives of those with BOS and their families. We have no paid staff and all officers and board members volunteer their time. 

We are currently looking for fundraisers to help support the BOS Foundation.  If you have any ideas or interests please email

Our Partnerships