USH Ambassadors for Florida - Darlene and Lynne

Darlene Laibl-Crowe

Darlene Laible-Crowe
Learn about Darlene from this recent article, The Modern Day Helen Keller: Darlene’s Story

Additionally, the Florida Usher Syndrome Support Group has been launched on Facebook.  This is a private group for those who have Usher syndrome, who are parents of children with Usher syndrome, and/or professionals who work with people with Usher syndrome in Florida. This is a place to support each other & network; share resources, news/updates & research on Usher syndrome; & spread awareness. Please feel free to invite others who have Usher syndrome & live in Florida. Know that you are not alone!

Contact Darlene at: ambassador.fl@usher-syndrome.org

Lynne Gilpatrick

Lynne Gilpatrick
Originally from RI/MA, my family and I moved to Clermont, Florida, in Lake County, in 2018.  I was diagnosed with Usher syndrome type 2 in 2016. I grew up wearing hearing aids and I currently have bilateral cochlear implants. I wear glasses & have low vision. I use a white cane. I was mainstreamed in school. I have a Master’s degree in Social Work. Prior to moving to Florida, I worked in Early Intervention for over 25 years, working with children birth-3 years old with developmental delays, & their families. I am married and I have 4 children. There is no history of Usher syndrome in my family. Since I stopped working in 2018 & we moved to Florida, I’ve become involved In spreading awareness. I would love to connect with you to continue to spread awareness!

Contact Lynne at: ambassador.fl2@usher-syndrome.org

Resources in Florida

  • This free, confidential, and simple registry, maintained by the Usher Syndrome Coalition, is the only registry exclusively for individuals of every age with any type of Usher syndrome, worldwide. By registering, you become part of a growing global community. The registry is our most powerful tool to connect the community, learn about the community, and support research.

  • For those who have Usher syndrome, who are parents of children with Usher syndrome, and/or professionals who work with people with Usher syndrome in Florida. This is a place to support each other & network; share resources, news/updates & research on Usher syndrome; and to spread awareness. Please feel free to invite others who have Usher syndrome & live in Florida. Know that you are not alone!

  • Relay Conference Captioning (RCC) is a free service for anyone who is deaf or hard of hearing to engage in group conversations in a videoconference, multi-party conference call or webinar. Using the same high-quality captioners that produce closed captioning for television, RCC users receive live, real-time text streamed to a computer connected to the Internet anywhere.

  • The FAVI Deaf-Blind Collaborative serves the entire state of Florida providing training and consultation services to the families and educational teams of Florida’s children and young adults (ages 0-22) with concurrent hearing loss and vision loss.

  • 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.

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