About this website
Back in the 1990s when I first got the internet, I decided to create a website dedicated to RP. I had some reasonable knowledge of how to build websites and went for it. It was pretty successful for quite a while. But as things happen I got busy. I had started a job which was taking up a lot of my time and wasn't able to continue.
Fast forward a good 20 years, I am not retired from that job and I have decided to bring back the website. Things have changed quite a bit since then. My knowledge of RP as well as the scientific advances in understanding the disease have increased. However, along with that, the complexity of making websites has increased as well and I am finding myself having to learn or at least fudge my way through the technology. Another change has been my vision. It is not what it used to be, so I find myself having to have more patience with myself as I work through relearning website design. The goal here is to try and explain all things I know about RP and do so in a concise manner. There are plenty of places where you can learn the details of say genetics, clinical trials and the research behind them as well as the inner workings of the eye. I have tried to explain things in a simple straightforward manner. If you need more complex details you can find them elsewhere.
If in reading through this site, you see some glaring errors or problems, feel free to let me know. There is a form on the contact page or you can email me at rppage (at) jwen.com
Lastly I want to dedicate this page to two people. My mother June Wenberg who like me had RP. On the day I was diagnosed with RP, she met a woman in the waiting room of Mass Eye and Ear who had created an organization to help the visual impaired in her town. My mother liked the idea and created first an offshoot of that group and then a full blown organization here on Cape Cod Massachusetts, Sight Loss Services. She ran the organization for over 30 years from 1981 to 2012. My mother showed that one person could make a difference and that person didn't have to be young or have perfect vision.
The second person I want to dedicate this page to is Wendy Blackstone. I met Wendy through my page back in the 1990s. Wendy had Usher Syndrome and two of us emailed each other at least once a week for over 17 years until her untimely death in 2015. We helped each other get through the trials that are RP, with Wendy showing the courage to work through hearing loss along with our mutual vision loss. She was kind, upbeat and positive. I miss her so much.