Events

2024 Achromatopsia Convention July 20

Omni William Penn Hotel

530 William Penn Place

Pittsburgh, PA 15219

Convention Registration Link:

https://www.paypal.com/ncp/payment/J4B3WHL62CP2N

Convention Schedule:

Final Schedule 2024

PRESENTER LIST

Dr. Shannon Boye

Shannon Boye graduated with a Ph.D in Neuroscience from the University of Florida in 2006. She is now a tenured full Professor and Chief of the Division of Cellular and Molecular Therapy in the Department of Pediatrics at the University of Florida. The focus of her research is developing viral vector-based gene therapies for the treatment of inherited ocular disease. She has multiple awarded and pending patents emanating from her research program, and is actively funded by the NIH, private foundations, and pharma. She is the recipient of several major awards including the Foundation Fighting Blindness’s Board of Director’s Award, the Gund Harrington Scholar Award, the ARVO Foundation/Merck Innovative Ophthalmology Research Award, and the ARVO/Pfizer Carl Camras Translational Research Award. Since 2010, she has given over 70 invited lectures both within and outside the USA. She is also Founder, Director, and Chief Scientific Officer of Atsena Therapeutics, a clinical stage gene therapy company based in Durham, North Carolina. Outside of her research, she is actively involved in the teaching mission of the College of Medicine at the University of Florida and is passionate about outreach/education outside the University. She routinely provides lab tours for visually impaired patients, hosts foundation meetings and educates patients about ongoing research being conducted to address treatments for their conditions.

Dr. Christine Kay

Christine Kay is a vitreoretinal surgeon and IRD specialist at Vitreoretinal Associates in Gainesville, Florida. Prior to this, she was an assistant Professor and director of the retinal fellowship and retinal genetics service at the University of Florida. She graduated magna cum laude from Harvard University with a degree in neuroscience and went to medical school at the University of Florida. She completed her ophthalmology residency at the University of South Florida where she was chief resident, and completed her vitreoretinal fellowship training at the University of Iowa. Dr. Kay is a vitreoretinal surgeon actively involved in multiple subretinal gene therapy trials now at Vitreoretinal Associates. She is the director of electrophysiology and retinal genetics at VRA and is involved as principal investigator in 15 IRD clinical trials currently. She is a member of Macula Society and Retina Society. She has a large database of IRD patients (900+) with over 700 patients genotyped. She is an active Foundation Fighting Blindness clinical consortium investigator involved in multiple IRD trials with the Foundation. She is also a clinical ophthalmology advisor for at Atsena therapeutics, a gene therapy company.

Low Vision Centers of Indiana

http://www.eyeassociates.com

Ocutech

https://www.ocutech.com/

Specialty Tint

https://specialtytint.com/

Dan Parker

www.theblindmachinist.com

Adult Panel: This moderated session will feature several adults with achromatopsia in a question-answer format. The purpose of the panel is to provide a format for which to discuss questions/issues/solutionsin the areas of school, college, work, and life relevant to those affected with achromatopsia. Featured panelists include:

Melanie Alt Sinohui:

Melanie was born in Southern California in the early 1980s where she was diagnosed with Achromatopsia at UCLA at age 5. She was an honor student throughout grade school, on the yearbook staff every year, and was active in her school choir, at church, and with her local and state affiliates of the American Council of the Blind.

Melanie obtained her Bachelor’s degree in Journalism with a Public Relations concentration from the University of North Texas and her Master's degree in Project Management 10 years later. Prior to finding a home in corporate America she was the editor of the annual pictorial history at UNT, the day editor of a county newspaper in WVA, where she wrote, paginated and edited, worked a few retail jobs. She spent 15 years at a telecommunications company working her way up from a Customer Service representative in the call center to a technical support supervisor, to handling high profile customer and agency complaints all to find her career as a Process Engineer. She now has spent the last 18 months as a Process Improvement Process Engineer at a financial banking institution.

She still sings, writes, scrapbooks, and is incredibly active at the local, state, and national level of the ACB including that Council of Citizens with low Vision International, holding several officer and committee chair positions where she is passionate about teaching transferable skills in a safe environment to the next generation. Melanie and her husband enjoy cooking, traveling, and wine tasting especially in the Santa Ynez Valley in California.

Mark Gordon:

My brother and I were born with full achromatopsia. We grew up on a small farm, and we learned to work hard. At 13, I did my first work for pay as a corn detasseler. Later, I attended the Indiana School for the blind. On campus, I worked the counter at the Student Center and also at the Sundries store. During lunchtime, I answered the switchboard. Off campus, I worked bagging groceries. When I came home from school on weekends, I would join my brother working together at a broasted chicken restaurant. At the school for the blind I took shop class, which fostered my interest in working with tools. In my young adult life, I worked at hotels in banquet setup. I met my wife in Washington State, where I worked for a plastic bottle Factory, and later, my wife and I got paid to count cars. My next career was working for a Budweiser distributor in Indiana building orders for delivery using a forklift and eventually becoming a route helper. I left that job to work at Little Crow Foods. I started on the high-speed packing lines but got the opportunity to move to the mixing department. Eventually, I became assistant manager of mixing operations responsible for all the new higher training as well as the maintenance for the department. Little Crow, a company that made products like cocoa Wheats, Miracle maize, and fast shake, went out of business after 110 years. I was 1 of 12 people to stay and remove equipment from the building and prepare the structure for new owners. After that, I decided to try something new and became a certified nursing assistant. As a CNA, I did very well and liked to help others. Eventually, management discovered my maintenance background and appointed me as maintenance director for the facility. Currently, I work as a CNC machinist and maintenance person for a company that specializes in the manufacturing of surgical instrumentation, joint replacement in plants, and various AR-15 platform parts. My wife and I are parents of 3 children. We live in the orthopedic capital of the world Warsaw, Indiana

I love antiques especially antique autos; my current project is a 1940 Chevy the 3rd 1940 Chevy I've owned in my life. I am a bioptic driver, and currently attend Ivy Tech working on my degree in CNC Machining

Alison Lynch:

Alison Lynch is an attorney living and working in New York City. She currently practices criminal law, but has previously worked on mental health litigation in jails and prisons, and on a contract for the Department of Defense. Alison is also a runner and triathlete, and has competed in the elite divisions for visually impaired athletes in both sports. She enjoys coffee, her cats, and exploring new running paths in the city and beyond.

Bryson Rajendran:

Bryson was born and raised in Atlanta, Georgia. He was Initially misdiagnosed with rod cone dystrophy, Bryson later received a proper diagnosis of achromatopsia around the age of six, following enrollment in an NIH clinical trial. Despite this early obstacle, Bryson's father instilled in him a drive for excellence, particularly in math and science, nurturing Bryson's innate curiosity and aptitude for scientific inquiry. However, Bryson found little joy in reading and grammar during his formative years.

Throughout high school, Bryson demonstrated his academic prowess by enrolling in challenging AP and IB classes while excelling in track and field. It was evident during this time that Bryson's passion lay in the field of science. This conviction led him to attend a National Federation of the Blind (NFB) science camp at Johns Hopkins University and secure an internship at a Georgia Tech chemistry lab during the summer between his junior and senior years.

Upon entering Georgia Tech, Bryson pursued a degree in material science and engineering with aspirations of obtaining a Ph.D. and becoming an inventor. However, a series of summer internships at Astroturf, Oak Ridge National Lab, Georgia Tech battery research lab, and 3M reshaped his career trajectory. These experiences led him to seek a operations role at a science/engineering company.

Seeking to broaden his skill set, Bryson pursued a one-year master's program in engineering management at Duke University. Bryson embarked on his professional journey with an operational leadership development program at an aircraft parts manufacturer called Meggitt. His roles provided him with diverse experiences in data analytics, business development, Lean Six Sigma, and project management, including an international assignment in the UK.

In 2021, Bryson departed from Meggitt to join Givaudan, where he currently serves as a Continuous Improvement Manager in Cincinnati, Ohio. Beyond his W2 employment, Bryson ventured into entrepreneurship alongside his father, founding a real estate business in 2021. To date, they have successfully acquired, renovated, and rented out three investment properties.