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USH Connections Conference
This Thursday we head to the 9th Annual USH connections conference in Chicago. It will be the largest Usher Syndrome related event we have been to. Along with 200+ other people, both families and individuals affected in some way by Usher Syndrome. We will be travelling with mixed emotions, on one hand we […]
Awareness Will Be the Catalyst for a Cure
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 […]
Breaking Through Medical Barriers
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 […]
Little Adaptations
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, […]
A New Perspective
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 […]
What A Night! Thanks For Helping Us In Our Efforts To Find A Cure For Usher Syndrome!!!!
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 […]
Is a Cure to Blindness Really in Sight?
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 […]
These Little Hands
Is ASL a Language? A regular question that comes up when raising a deaf child. It comes up when talking with friends, with family, with other parents, when talking with doctors and specialists, and it comes up during her developmental assessments. It’s a question I may have asked prior to having a deaf child, after […]
A Retrospective on Worry
The other day a Facebook memory showed up from when Rebecca was only a few months old. Beth created the post and it was a picture of Rebecca with a caption saying that she could not wait until the day Rebecca could hear her tell her how much she loved her. When I saw […]
Interview With Molly
Jake’s cousin Molly is a Junior at Fairhaven High School. Molly is taking a Media Production Class, and for a Photojournalism project she decided to do an interview on us and Usher Syndrome. Molly is nominated for two student New England Emmy Awards, and she wants to go on to major in Communications. Although we […]
Memories for Rebecca 