USH Ambassador for Nebraska - Nick Giaffoglione

Hello! My name is Nick Giaffoglione and I am the lucky father of two boys, Brooks and Beckham. I am a sighted/hearing male who works as a pediatric pharmacist at Children’s Nebraska.

Our older son, Brooks, was diagnosed with USH2A at 6 months old. Similar to other stories you may have heard, my wife and I were unaware of Usher syndrome prior to the diagnosis and were unsure of what this life-changing news would bring to our family.

With heavy hearts, we processed this information and then decided to attack the Usher syndrome diagnosis in the only way we knew how - we read, we listened to other stories, and we found and joined the amazing Usher Community.

 My mission as the USH Ambassador for Nebraska is to stay as updated as possible with the 3 R’s — Research, Resources, and Reaching out to the community to spread awareness. Thus far, my wife and I started a yearly Usher syndrome golf fundraiser to spread the word and raise money. In addition, I gave a presentation called “Usher Syndrome and The Unseeable Genes” to a college-level genetics class. I plan to continue finding ways to spread the word and build an Usher Community in Nebraska. 

Please reach out with any questions - I look forward to hearing from you. You can email me at ambassador.ne@usher-syndrome.org

“Alone we can do so little, together we can do so much.” -  Helen Keller

Resources for Nebraska

  • The USH Trust is the largest international contact database of individuals with Usher syndrome. Created and maintained by the Usher Syndrome Coalition, it is our most powerful tool to connect and inform individuals living with Usher worldwide. The USH Trust allows us to get to know and serve the community better, and to do what we do best: identify, build, support, and connect the community, both within the Usher community and with the research community. We do this via email, telephone, videophone, social media, webinars, local social events, our USH Connections Conference, and the many resources on our website. Come, join us!

  • Program and services for youth and adults with combined vision and hearing loss.

  • Provides free telecommunication evaluation, equipment, and training to children and adults with significant vision and hearing loss who qualify. iCanConnect is a national program authorized under the National Deaf-Blind Equipment Distribution Program.

  • Providing technical assistance to families and educational teams who serve learners with combined hearing and vision loss in Nebraska (birth to 21 years old).

  • A national volunteer organization created to empower the voices of families of individuals who are deaf-blind and to advocate for their unique needs.

  • Individuals with Usher syndrome who are passionate about research have a new data collection platform to join. The Usher Syndrome Data Collection Platform, or USH DCP, is hosted by RARE-X, a nonprofit dedicated to accelerating research. By entering your health information into this secure platform, you will become part of a global database of de-identified information available to researchers worldwide. That means that only you can see your data. Only you can change your data. Your personal information (name, date of birth, address, etc.) will not be shared without your permission. As the DCP grows, more researchers will become aware of Usher syndrome. This can lead to the development of clinical trials, new treatments, and new therapies. YOU hold the key to unlocking future research discoveries.