The CRBF Board of Directors is made up of passionate, dedicated professionals that all have at least one family member affected by CRB1 retinal disease. This motivated group works together to manage all facets of the organization, as well as working closely with the Scientific Advisory Board to insure funding is spent wisely and effectively on projects that will move CRB1 to treatments and cures.
Kristin Smedley, President
Kristin Smedley is a professional speaker, advocate for the blind and visually impaired and up and coming author. She holds a BS in Elementary Education and had a thriving career in the field, until a rare eye disease happened. Kristin’s two sons were diagnosed with Leber’s Congenital Amaurosis caused by mutations in the CRB1 gene. In 2009 Kristin added a new life focus: coordinating research toward treatments for this disease. Kristin lives in Bucks County, PA with her three children, Michael, Mitchell and Karissa. When she is not fundraising and raising awareness for CRBF you can find her cheering at Karissa’s soccer and basketball games, crazily applauding Mitchell’s performances on stage, or singing along with Michael and his band at their “gigs”.
Mike Smedley, Vice President
Michael J. Smedley is Regional VP, Mid Atlantic Region for Veolia Energy North America. Mike holds a BS degree in mechanical engineering from Temple University and an Executive MBA from The Kellogg School of Management. Mike has responsibility for multiple facilities, including Trigen-Philadelphia Energy Corporation; a 150 MW cogeneration facility providing district energy services to over three hundred customers in downtown Philadelphia, Trigen-Trenton Energy Company; a 6 MW cogeneration facility providing district energy services to over thirty customers in downtown Trenton as well as other operational assets in New York City. Mike is responsible for all aspects of the facilities ranging from safe reliable daily operations to financial performance. Mike lives in Bucks County, PA.
Wendy Rankine, Treasurer
Tricia Smith, Secretary
Tricia Smith works full time in the Medical Staff office of a behavioral healthcare hospital. Tricia’s daughter, Gracyn,was diagnosed with Retinitis Pigmentosa (RP) at the age of 5. Tricia is also the proud mother of two amazing (un-affected) boys. Tricia believes that without this foundation and the families that are so involved with raising funds and networking with scientists, we would not have the HOPE that there WILL be a cure for Gracyn! Tricia is married to her high school sweetheart, Scott, and we still live in the same town we grew up in. Outside of her career and work with the CRBF, and you will often find her cheering for her children on the basketball court, tennis court and on stage.
Dan Jones, Director of Advocacy
Dan Jones is Director of External Affairs for Intuitive Surgical. Dan obtained his BS and PhD in Chemistry from UC Berkeley and the California Institute of Technology, respectively. Dan also obtained his MPhil in Policy Analysis from the RAND Graduate School. Dan lives in Alexandria, Virginia, with his wife Pam and their daughters Kelly and Jill. Kelly was diagnosed as visually impaired when she was a few months old. Later testing revealed that Kelly has Leber’s Congenital Amaurosis (LCA) caused by the CRB1 gene mutation. Dan has served on the CRBF Board since 2013.
Pam Jones, Member
Pam Jones holds Virginia teaching credentials, with specialization in math and science. Pam is a frequent substitute teacher and is active in various public school programs. Pam earned her BS and MS degrees in Earth Science from the Johns Hopkins University and Boston University, respectively. In addition, Pam enjoys competitive rowing and coaching volleyball. Pam lives in Alexandria, Virginia, with her husband Dan and their daughters Kelly and Jill. Kelly was diagnosed as visually impaired when she was a few months old. Later testing revealed that Kelly has LCA caused by the CRB1 gene mutation. Pam has served on the CRBF Board since 2015.
Lisa Billingsley, Member
Lisa Billingsley graduated from the University of Missouri- St. Louis in 2001, with a bachelor’s degree in Psychology. She has been employed with several school districts working with children with Autism and behavioral concerns. As an urban city social worker, she helped to better the lives of at-risk youth and their families. She married her husband, Gregory, in 2004. After the birth of her first child, she left her career to focus on raising her children. Lisa commits her time as a stay-at-home mother, volunteering at her children’s school and attending the many hundreds of her kids’ activities. She is a member of the local Lions Club, where she serves her community by conducting free vision screening at schools and public events. Lisa is a dedicated mother of four, determined to find a cure for her son Jacob and all others with the CRB1 gene mutation. She has been a member of the board of directors since 2014. Her life’s ambition is to work towards a cure for all affected genes of retinal disease.
Kim Hoffman, Member
Kim works full time as a controller for an engineering firm in Youngstown, Ohio. Her and her husband Mike of 16 years have three children; Sarah, Olivia and Sean. Upon receiving the diagnosis of their daughter Olivia’s CRB1 related retinal dystrophy, Kim and her family became active in fundraising efforts for Curing Retinal Blindness Foundation. They are also active members in their local Lions Club where Mike currently serves as President and Kim recently earned the Knight of the Blind award. Kim and her husband are no strangers to fundraising for non-profits. They met serving on the board of a local animal shelter where they planned fundraising events and were also involved in a large campaign raising enough funds to allow the shelter to purchase land and build a large full-service state of the art facility. Kim loves the outdoors and spending as much time as possible with her family.
Vyto Kab, Member
Susan Schneider, Member
Bob Smedley, Member