![]() Each of you holds your history and your family’s history in your heart. But what I really look forward to in the coming months is meeting the EXPERTS - YOU! Every person living with Usher syndrome is an expert. I have met a few Coalition board members and researchers on the phone. I’ve been reading research, blogs, and success stories. I have spent my first few weeks reviewing our mission, history, informational and promotional materials, and the gold mine of information that we have on our website. I understand the importance of confidentiality and am a certified member of a research review board for a local college.Īs your new international registry director, my immediate goal is to learn everything I can about the Coalition. It was through the registry that I learned the power of numbers and how statistics could be used to advocate for funding and services, as a tool for research, or as a way to connect individuals with similar, rare syndromes. In later years, my experience in administration included managing a national registry. The genetics of Usher syndrome became real to me when their deaf-blind sisters and brothers came to the Center for training, or when their sighted-hearing parents, siblings or children came to visit. It was from those living with Usher syndrome that I learned about the impact of deafness and vision loss on one’s ability to navigate the environment, manage a home, retain a job, raise a family and remain socially connected to their community, whether it was the hearing community or the Deaf community. It was through this work that I learned about the progression of Usher syndrome, the ongoing and unpredictable loss of vision that was the hallmark of RP (retinitis pigmentosa), and the functional and emotional impact of these changes in their lives. We played cards with raised print, tried watches with raised dots and felt for ridges on coins to use in vending machines. I learned about cataracts and white outs, taking time to adapt when coming in from outside, wearing hats with “bills” (like baseball caps) to protect the head and face from unseen objects like tree branches dangling in the middle of nowhere. We found quiet corners to meet so that background noise wouldn’t interfere with our lessons. In addition to “signers,” I worked with students with Usher II and possibly Usher III (although at the time, we probably didn’t know it) who communicated aurally/orally. When we worked on folding paper money for identification purposes, I slowly signed the number 1, 5, 10 or 20 into the crook of their hand as they transitioned from visual sign to tactile sign. When we sat down to play board games, they held on to my wrist to “track” my signs. ![]() When we discussed how to set a tactile alarm clock, they stepped back when I signed so that they could better see my signs in their visual field. And it was from them that I learned about the impact of Usher syndrome in very practical ways. They became some of my most incredible lifelong mentors and role models for perseverance, humor, spirit, creativity and determination. Later, as a daily living skills instructor, there were always students with Usher syndrome in my classes. As a young volunteer learning sign language, some of my first mentors were adults with Usher syndrome. I have been fortunate to work with youth and adults who are deaf-blind for many years. And because of the amazing success of the Usher Syndrome Coalition’s “ Own the Equinox,” campaign, I now have this wonderful opportunity to work with all of you. I left the Center in August, seeking new challenges and opportunities. Some of you may know me from my many years with the Helen Keller National Center (HKNC). Nancy O'Donnell, International Registry Director, Usher Syndrome CoalitionĪ big hello to everyone in the Usher Syndrome Community! This is Nancy O’Donnell (sign name “N” on left side of chest), and I am so thrilled to be blogging as the Coalition’s brand new international registry director.
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