We started this blog to bring awareness to Usher Syndrome, mostly in an effort to prepare the world for Rebecca, to tell as many people about her and her syndrome as possible to help provide her with a future of inclusion. We try to keep away from blogging about the negative side of raising a […]
I found this great article on Hack A Day about some research being done to enhance the quality of sound from Cochlear Implants with a method using light. Current solutions relay on electrical stimulus and only a small number of electrodes can be used at one time. This is because electrical signals are difficult […]
Another great time was had at the 2nd Annual “Team Becca” Fundraiser! The amount of raffle items and the quality of the raffle items was just unbelievable!! So many amazing people and businesses donated some incredibly awesome raffle prizes, and we are so grateful!! Ken from KJ Tunes did another great job of keeping the dance […]
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.
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 […]