When two of Kristin Smedley’s three children were diagnosed with an Inherited Retinal Disease, CRB1-LCA, she became an advocate for the blind and a leader of a worldwide research organization. Kristin co-founded and manages the Curing Retinal Blindness Foundation, the only patient organization for CRB1-LCA/RP. Kristin is also a speaker that energizes audiences and challenges them to raise expectations of what is possible for people without sight, and inspires them to gather the tools they need to achieve their personal greatness. Kristin writes the Eye Believe in Miracles blog where she finds the silver lining in life’s challenges. Follow the blog and connect with Kristin at www.kristinsmedley.com and on Twitter @KristinSmedley
Amber Bobnar lives with her husband and 10-year-old son, Ivan, in Watertown, MA, where Ivan, who is diagnosed with Leber congenital amaurosis and Joubert Syndrome (due to mutations in the CEP290 gene), attends the Lower School at Perkins School for the Blind. Amber is founder and website administrator of WonderBaby.org, a website dedicated to supporting parents and caregivers of children who are blind or visually impaired, with or without additional disabilities.
Dana is a recently retired adult and reference librarian with the New York Public Library. She lives in New York City with her husband, Steve. Dana has hearing loss and is legally blind from a progressive condition called Usher Syndrome. As a librarian, she organized several Low Vision Technology Fairs and a series of programs bringing art and museums to people with low vision. Dana writes about museum tours and programs for people with vision loss, and her journey as a visually challenged artist, on her website www.artandlowvision.com.
Jack McCormick is a business student at Canada’s Wilfrid Laurier University who lives with Leber congenital amaurosis (LCA due to mutations in the RPE65 gene). He is an active accessibility advocate who dreams of a future where society no longer defines people by single characteristics. Upon graduation, Jack hopes to start work in the field of Human Resources and continue to volunteer as an accessibility advocate.
Stephanie Vetere Sims, M.D.
Stephanie is a wife, mother, psychiatrist, and IRONMAN triathlete living in Jacksonville, Florida. She is a carrier of the CHM gene, and a fundraiser and advocate for Team CHM and the Choroideremia Research Foundation. To learn more about the CRF, visit www.curechm.org
Becky Andrews, LCMHC, is the Clinical Director of Resilient Solutions and author of “Look Up, move forward: My journey of losing vision and finding resilience.” In her spare time, she enjoys running, tandem biking, travelling, and time with her family, friends and guide dog, Georgie. She was diagnosed with retinitis pigmentosa when she was 18 years old.
Janet LaBreck, diagnosed with retinitis pigmentosa at 10, spent 20 years as an advocate for the blind before becoming the Commissioner of the Massachusetts Commission for the Blind. In 2013, President Obama nominated LaBreck Commissioner of Rehabilitation Services Administration within the U.S. Department of Education, a role she held until President Obama left office in 2017. Photo courtesy of Perkins School for the Blind.
Janet LaBreck is serving as a paid consultant to Spark Therapeutics, lending her personal and policy expertise to help inform our efforts on behalf of the IRD community.
Jennifer Schwab, MS, CGC
Jennifer Schwab, MS, CGC, a board-certified genetic counselor, received a B.S. in Biology from Northeastern University in 2010 and an M.S. in Genetic Counseling from the Boston University School of Medicine in 2012. She is a Clinical Genetic Counselor at Rhode Island Hospital and a Teaching Associate at the Warren Alpert Medical School of Brown University. Jennifer serves as a member of the New England Region Genetics Group Board of Directors, and active in the National Society of Genetic Counselors.
Theresa Taylor is an advocate in the IRD community, runs a successful business, and is raising two young children in the heartland of the country. When she isn’t busy running the family business, in Union, Wisconsin, you will find Theresa on the baseball, football, or soccer field cheering on her kids.