Greetings Family and Friends,
Help me in my quest to cure blindness! You can help restore sight to millions living in darkness by attending VisionWalk with me, making a donation, or both!
In 2001, I was diagnosed with a retinal degenerative eye disease called Stargardt's, that has left me legally blind. For 17 years, I have been struggling with constantly finding transporation for myself and my boys, in completing day-to-day activities, and fulfilling my hobby/career as a musician/teacher, which has now turned into a life as a homemaker and stay-at-home mom.
Stargardt's is a juvenile form of macular degeneration - a retinal disease that affects the central vision in the center (macula) of the retina. For those that do not know what the retina does, it sort of controls your fine-tuning in your sight field- like a camera lens. The disease makes it seem blurry permanently is the best way I can describe it. Stargardts gives the retina a mallered appearance which makes the vision distorted. I also have trouble with reading various colored ink and light sensitivity. Reading activities such as books, recipes, instructions, etc. has become almost impossible for me without aide, and even reading music has become obsolete for me. Sometimes magnifiers don't help either. Even when it comes to watchig TV, I have to sit close- and we have a 52"!
For me, this disease has taken a bit of independence away from my daily living. I have to solely rely on family and friends to drive me places like the grocery store, doctors offices, my son's school, etc. As a classically-trained musician and Music teacher, I have been limited in my career options and I am in constant fear of how much "vision loss" I will eventually endure. My children, Ryan (11) and Tyler (8) in the pics below, are what keep me going every day (and my husband of course). I love them all dearly. However, my little guys are at risk for developing this condition and so continued research is necessary to perfect processes like gene thearpy, which will hopefully help generate new, healthy cells to outweigh the old, mutated ones, therefore preventing further vision loss. If you have ever met my children, you know they deserve the very best that life has to offer! I dread the day I may have to tell them that they cannot drive or get their license, cannot play certain sports, etc. Please help prevent this from happening.
For 5 years, I fulfilled the role as Visionwalk Chairperson here in WNY and am truly blessed for having had this opportunity. It has taught me a lot about perseverence and leadership and has helped me to develop new and everlasting friendships and connections throughout the community.
Your financial support and walking side by side with me on Walk Day will bring us closer to a cure so that someday my children will never have to endure the challenges that come with having a visual diability - and that Cure is in Sight!
Here is my website with info on all our upcoming events, my blog/story, and current news and research articles.