Today we learned about the first person in the US treated for a degenerative retinal disease using an FDA approved gene therapy. Jack, a thirteen year old boy who is in the video below has a retinal disease which is caused by a mutation of the gene RPE65. Jack’s condition was treated on Tuesday and […]
I thought a lot about courage today and what it meant. The thought was prompted when I got a text from Beth about her day, it was like any normal text but this one caused me to stop and give her a call. I knew her plan today, it was like most days, between the […]
we are preparing our next fundraiser on May 5th in middleboro to raise awareness and funds for curing blindness and Usher Syndrome. Learn more about our fundraiser here We would love to hear from you in the comments below if you are able to join us. Official invtes will be sent out soon.
It’s been quite a while since our last blog post. We have been so busy. We took the girls to Disney in November just before Thanksgiving, made it through the holidays, and then it was off to Vegas! It’s been a busy few months! Disney was quite a trip! Aside from the typical challenges of […]
On Tuesday the 31st I made a trip up to the Perkins school for the blind in Watertown to meet with a couple of the staff there and show them the BecDot, a braille educational toy I am developing to help provide access to blind and visually impaired people ( more on the device […]
So as it turns out, my assumptions at story-time were correct. We went to Perkins School for the Blind last week for a visual assessment, and the results were not what we had hoped for. We were told that Rebecca’s visual acuity is 20/190+ and that she is right on the fence of being legally […]
This a project I am working on called the BecDot which is a literacy teaching tool I invented for our daughter Rebecca that could be used to teach visually impaired children Braille concepts.. This video talks a bit about our mission. Learn more about Usher syndrome and get involved We are telling the world about […]