Tag Archives: deaf blind

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 […]

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 […]

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 […]

Our Sweet Beccs (Beth)

Rebecca is getting used to her CI’s, as are we.  She leaves them alone most of the day, only pulling at them when she’s bored.  She blinks when a loud sound is made, and she even wiggles and dances when she hears music!  She is making a lot more sounds already, and she seems to […]

Bittersweet

On Wednesday December 21st our family was invited to an Usher Syndrome awareness event that was being sponsored by Arts for USH.  The significance of the date was that it coincided with the winter solstice and occurred on the darkest day of the year.  Not exactly sure how many people walked but I believe it […]