Rebecca is doing her part to help find a cure.  The Foundation Fighting Blindness reached out to us to ask if they could use her story and her pictures in their latest campaign to raise funds to help find a cure.  We were of course happy to help and love the way the email campaign […]

  When you take a look at the clinical trial space its difficult not to see the major flaw with studies that target diseases that are considered rare. The big problem is patient enrollment and retention.  Patients with rare diseases are, well rare… There are a number of efforts that help with the recruitment and […]

When a child is born you worry about everything regardless if the child is born with a disability or not.  In the end we find out its really not that hard, there are certainly no shortage of products out there today that make out lives tremendously easier.  I mean take for instance the diaper genie, […]

I was driving home from the office the other day thinking of the day we found out that Rebecca would lose her vision and how hopeless we felt during those first few weeks.  We were hoping for a cure but mostly we were preparing for her to lose her vision.  When we started the blog […]

Huge shout out to the folks over at Philips Hue!! They saw our blog post about our lea puzzle solution using their smart lights and decided to send us their latest model with richer colors.  Looking forward to integrating these new lights into Rebecca’s Lea puzzle solution! Not only does this help our Rebecca but I […]

What an amazing time we had last night with more than 200 people!!!!  I can’t thank you all enough for coming out and supporting our cause, all while having such a great time!!!  I would like to thank the most incredible DJ, Ken Souza from KJ Tunes of Fairhaven, for rockin’ the house with his […]

Of course I would love to say emphatically YES, but there are still challenges and obstacles in the way.  With that said however we are closer than ever, the advances in finding a cure to inherited retinal diseases has grown exponentially in the past 5-10 years. We recently attended a presentation at the Carroll Center […]