USH Ambassadors for Florida

Lynne Gilpatrick

A white woman with short dark brown hair is smiling.

Originally from the Rhode Island/Massachusetts area, my family and I moved to Florida in 2018.  I was diagnosed with Usher syndrome type 2 in 2016. At that time I was instructed to stop driving. I grew up with bilateral sensorineural hearing loss and wore hearing aids. I currently have bilateral cochlear implants. I have low vision and I use a white and red 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 twenty-five years, working with children birth to three years old with developmental delays and their families. I am married and we have four children. There is no history of Usher syndrome in my family. 
In 2020, I became a volunteer with the Usher Syndrome Coalition and became Co-Ambassador for Florida. My goal is to spread awareness, share resources, and connect with others impacted with Usher syndrome. I created a private Facebook group page for Floridians impacted by Usher syndrome. In addition, we have Connections Calls, an online group that meets via Zoom once a month. 
If you have a question or need assistance, I would love to help you. If I do not know the answer, I will find out for you. You are not alone!

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

Dr. Jasmine Simmons

Young Black woman with braided hair parted in the middle and nose ring smiles at camera. She is wearing a blue blazer and white collared shirt.

Hello all! My name is Dr. Jasmine Simmons. I have Usher syndrome Type 1D. I am originally from Columbus, Ohio, however, I currently reside in Jacksonville, Florida. I am an audiologist and currently work for a non-profit clinic. 

I was born profoundly deaf and l have a cochlear implant. I was diagnosed with retinitis pigmentosa at the age of seven. I was recently diagnosed as legally blind at the age of 28. I am no longer driving. It has been a challenging process, however, I am finding new strengths as I go through this journey. I am now using a white cane more frequently and confidently.

It is important to share that we all may be in different stages, however, we are here to help you get through whatever stage that may be. I look forward to getting to know each of you. This is a safe place for us to support each other and share our stories.

You may contact me at ambassador.fl@usher-syndrome.org

Divya Goel

Namaste/Hello! 

My name is Divya Goel, and I live in Florida. I was originally raised in Ontario, Canada, and have Indian (South Asia) heritage. I live with my parents and my compassionate Mini Australian Shepherd. I have Usher syndrome Type 3B, also known as HARS 3B, an extremely rare form of Usher syndrome that affects both hearing and vision. 

I have been profoundly Deaf since infancy or early childhood, and began experiencing vision loss around the age of three or four. For many years, I was believed to have Usher syndrome Type 1. In 2018, genetic testing confirmed that I have the rare HARS 3B form of Usher syndrome. My vision journey also includes full color blindness, which has shaped how I experience and navigate the world. Before learning formal sign language, I first communicated with my family and extended family through body language, gestures, my own signs, and lip reading. These were the ways I found to express myself and connect with others when I was young. Later, at the age of seven, I began learning Canadian Sign Language and American Sign Language (ASL) at a Deaf school in Ontario, Canada, where I spent five years developing my formal sign language and communication skills.

After moving to Florida, I encountered many barriers in communication, accessibility, education, and independence. Rather than allowing those barriers to define me, I became determined to break barriers and advocate for myself and others. My advocacy journey began in high school and has continued to grow from local communities to national and international levels. 

A meaningful milestone in my advocacy journey came in 2009, when I met President Barack Obama as part of a DeafBlind leadership program. I have also built connections and supported advocacy efforts with DeafBlind and Usher communities internationally, including in India and Nepal. I previously served for several years as an USH Ambassador for the Usher Syndrome Coalition of India. As an USH Ambassador for Florida, I am passionate about building advocacy, expanding outreach, strengthening education, raising awareness about Usher syndrome, and strengthening connections within the Usher syndrome and DeafBlind communities. I hope to help individuals, families, professionals, communities, and many others better understand Usher syndrome while encouraging greater access, support, inclusion, and opportunities. I am eager to continue learning Protactile, International Sign, Indian Sign Language, Haptics, and other communication approaches so I can continue connecting with and learning from DeafBlind communities around the world. 

I warmly welcome you and look forward to bringing the bright light of hope, positivity, and sunshine to the Usher syndrome community. 

You may contact me at: ambassador.fl3@usher-syndrome.org

Resources in Florida

  • 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!

  • Individuals with Usher syndrome who are passionate about research have a new data collection program to join. The Usher Syndrome Data Collection Program, or USH DCP, is powered by RARE-X, a program of Global Genes - a nonprofit dedicated to accelerating research in the rare disease community. 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, email address) 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.

  • 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.

  • 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.

  • If you are an adult resident of the City of Jacksonville from a low-income background, you may be eligible to receive hearing care from our Community Audiology Services Program, in partnership with the City of Jacksonville.

  • The VR process is a series of steps that will help you prepare for, keep or start a job based on your interests and abilities.