Category Uncategorized

Developments in Gene Therapy

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 […]

Courage

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 […]

Save The Date May 5th

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.

Tough words to hear, “Legally Blind”

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 […]

Feeling Like We Don’t Belong

I took Rebecca to story time this morning as I usually do on Thursdays.  We walked in and sat on the floor with the rest of the moms/grandmothers and their toddlers.  A few minutes into story time Rebecca was curious and got up to go look at something at the back of the room.  A […]

Now Approaching Boston

This past weekend I spent a good portion of the day at a visions seminar hosted by the Foundation Fighting Blindness.  It was not until I received a text from Beth that I realized that exactly one year prior was when we found out that Rebecca would eventually go blind.  Before that day I would not […]

Update (Beth)

Rebecca is doing amazing.  She can sign over 40 words now, and she can say “Mama”, “Dada”, “no”, “hi”, “bye-bye” (which comes out more like “die-die”), “Papa”, and she is very close to saying “Grandma”.  Rebecca is walking all of the time now, and considering her lack of vestibular function, she is doing a great […]