Baltimore Chapter Meet the Board
Jay and LuAnn moved to Maryland when he was hired to be administrator at The Wilmer Eye Institute. He worked with the esteemed Dr. Mort Goldberg, which began their original interest in the cause of blindness and blind research. Jay is now Chief Operating Officer at Howard County General Hospital, a member of Johns Hopkins Medicine. Lu Ann teaches at St. Paul’s School for Girls and has a friend whose son has Retinitis Pigmentosa. In addition, Lu Ann started a small foundation that was in existence for 10 years called “Common Senses.” Its mission was to provide sports opportunities for blind children. Jay and LuAnn have chaired the past two Baltimore Visionary Awards Dinners and are chairing the 2013 dinner. Jay and Lu Ann served as the co-Presidents of the Baltimore Chapter for two years and in 2013 they were named National Trustees.
Chris Day is a dental hygienist, wife and mother. Chris and her husband, Doug, have two fabulous children, Derrick age 6 and Meredith age 4. Both Derrick and Meredith are blind. They both have a rare form of RP called LCA, which causes blindness from birth.
Through the Foundation, Chris and her family got involved in Project 3000, a genetic study striving to help those affected by LCA. It was inspired by Foundation-funded clinical trials for a gene therapy that has restored vision in one child and a handful of adults whose LCA was caused by a defect in a specific gene.
Over the last four Baltimore Vision Walks, Chris’ family team, Walking for a Day, has brought in roughly $7,000, and the family is now featured in a promotional video shown during the Foundation’s dinner events.
Chris and her family are preparing the children to live with visual impairments.Derrick and Meredith are Braille readers and cane users, but, I truly believe that there will be a cure in their lifetime, or at least a treatment. The Foundation has been so supportive in providing information and resources. What I love most about the Foundation is that they are striving to find a cure!
Until I met my husband, Ted, I had never heard of Retinitis Pigmentosa (RP). When he told me he had a hereditary eye disease that caused night blindness and that he could be blind by the time he was 40, I was sure that would never happen. And I never considered the possibility that our children would inherit the disease. I had no idea how wrong I was, or that I would be thrown into a world of eye doctor appointments, clinical trials and yes, sometimes panic and heartbreak.
All three of our children have RP in varying degrees. When my children were first diagnosed at a young age, we were told there was no hope, no cure, and no treatment, get them guide dogs and teach them Braille. Bryan is the least affected so far. He has night blindness, but his peripheral vision is not yet affected. Laura no longer drives, uses a white cane, and has just recently received a Guide Dog. She still works, but has tunnel vision. She and her husband, Philip, have my two beautiful grandchildren, Ashton (4 ½) and Emma (2 ½). Ashton has just been diagnosed with RP. Sara still drives, in daylight only, but has the most problems. Along with the typical RP, she has edema (a condition found in “some” RP cases) and glaucoma.
I discovered Foundation Fighting Blindness when my children were small, and registered my family. For many years that was the extent of my involvement with the Foundation. About four years ago, I received an eblast from the Foundation for a Coffee Social sponsored by the Shiloh Lions in my area, to meet other people with low vision problems and to hear about an event they sponsored to raise funds for the Vision Walk in Baltimore. That was the beginning of my real involvement with the Foundation.
The Foundation Fighting Blindness has given me a means to do my part to help find a cure. I no longer feel so helpless. It’s game on – we’re going to beat this thing.
Pictured above: Bonnie (far left) with her teamates
Dr. Zack is the Guerrieri Professor of Genetic Engineering and Molecular Ophthalmology at the Wilmer Eye Institute, Johns Hopkins University. He is also a professor in the Departments of Molecular Biology and Genetics, Neuroscience, and the Institute of Genetic Medicine. Dr. Zack graduated from the Albert Einstein College of Medicine in 1984 where, as part of the NIH-funded Medical Scientist Training Program, he received a MD and PhD in Molecular Immunology. After a one-year internship, Dr. Zack completed a three-year residency training program in Ophthalmology at the Massachusetts Eye and Ear Infirmary, Harvard University. In 1988, he moved to Johns Hopkins, where he pursued specialty training in glaucoma and molecular biology post-doctoral work. Dr. Zack was appointed assistant professor at Hopkins in 1991, associate professor in 1997 and professor in 2001. Dr. Zack’s research has implications for understanding the pathogenesis of inherited retinal diseases
One interesting thing that I've learned about living with the challenges of vision loss is that it not only affects me personally but also those around me. Retinal disease is nothing new for my family as one third of our immediate family has been diagnosed with either Retinitis Pigmentosa (RP) or Age Related Macular Degeneration (AMD). Although one in three will have the physical loss of vision, the entire family is affected by the obstacles this loss brings to our loved ones.
Based on family history I was diagnosed with RP in early childhood. Like most with this diagnosis my parents were told that nothing can be done to stop or cure the disease as there wasn't much information available. In the mid '70's my parents were introduced to the RP Foundation which later became the Foundation Fighting Blindness (FFB). Over the years we have been passively involved with the FFB, attending meetings and supporting the cause with donations.
My wife and I are both Baltimore natives and met in 1989. At that time my vision loss wasn't that significant and neither of us realized what it would come to mean. Over the last 20+ years, together, we have continued to learn and readjust to the difficulties that gradual vision loss presents both in our personal and professional lives.
In 2009 we became more actively involved with the FFB by participating in the 2nd Annual Baltimore VisionWalk. Since 2010 we have taken part on the planning committees for the 3rd thru 6th Annual Baltimore VisionWalks. In 2012, we joined the FFB's Baltimore Chapter Board. We also participated in the Montgomery County and Atlanta VisionWalks, showing support for other family members.
We hope that our efforts will eventually lead to a cure for the various retinal diseases out there. In the meantime we also hope that our experiences will help others who are also dealing daily with vision loss.