USH Panel Speakers

Linnea is a 16 year old from Tampa, Florida and was diagnosed with Usher Syndrome type 1B in 2014. She was born profoundly deaf and received her first cochlear implant at 18 months old and her second at 11 years old. Her hobbies include reading, art of all kinds and horseback riding - in her spare time, you will usually find her doodling away at the kitchen table. Linnea will be a Senior in the fall and attends Pasco High School. She is currently in an academically rigorous program known as the Cambridge program in order to prepare her for college. Her future plans consist of attending a university - most likely University of South Florida - and pursuing a degree in either animation or medical sciences. Linnea frequently speaks about Usher Syndrome and the importance of self-advocacy in regards to being deaf-blind, and has organized an Usher Syndrome Awareness event at her school. She has traveled to many events in Florida and other states in her quest to educate, and has been featured in a Pasco County school board video that has been shared thousands of times on Facebook. She continues to travel and speak publicly about her condition to bring awareness to Usher Syndrome to this day.

Lynne is a senior underwriting attorney for Chicago Title and Commonwealth Land Title Insurance Companies, part of Fidelity National Financial. She and her husband Bob have two daughters, Harper, 5, and Tatum, 3. They live, along with their two dogs, in North Reading, Massachusetts.

Harper did not pass the newborn hearing screening at birth. After two follow up tests at Children’s Hospital Boston, she was diagnosed with bilateral sensorineural moderate hearing loss. She received hearing aids soon thereafter, and began early intervention services including speech therapy, teacher of the deaf/HoH sessions, and music therapy. She was also fortunate to be able to attend the Decibels sponsored early intervention program at the Minuteman Arc for hearing loss.

At five years old, Harper is well advanced in both receptive and spoken English language as compared to her typically hearing peers, and excelling in early literacy, and socially in a mainstream school system with supportive services. Harper also maintains close relationships with other children with hearing loss/deafness.

On March 14, 2013, as a result of genetic testing, Harper was formerly diagnosed with Usher Syndrome 2A.

As a mother of a young child with Usher, Lynne is hopeful that treatments and a cure will be available before her daughter has significant vision loss. She continues to be inspired by the many men and women that she has met in the Usher community and their determination to live a full life.

Derrick Phillips, a Chicago native, was diagnosed with Usher syndrome type 2 as a teenager. Currently, he is superintendent at the Illinois Center for Rehabilitation and Education, a position he’s held for over a decade. He is an ordained minister who holds a B.A. in Business Administration and a Master’s in Counseling and Guidance from Roosevelt University.

Derrick is a member of the Illinois Deaf Blind Advisory Board. He completed four marathons, published two books, and received numerous awards for motivational speaking. His future plan is to become a national motivational speaker with a message of encouragement especially for those with disabilities.

Hello, my name is Kevin Richmond. I identify as a DeafBlind, gay, Vermonter. I am a current professor of American Sign Language and Understanding Deaf Culture courses at the University of Vermont. Formerly a foster father, I have now proudly adopted my Deaf son. At age 15, I was diagnosed with Usher syndrome, Type 1B. In years 2014 and 2015, I visited Seattle and found my DeafBlind community. This experience helped me accept who I am, as I am. I use ProTactile for my communication. I think it’s important that DeafBlind folks know that they’re not alone and for the Deaf community to support us as a community. Hopefully this will help others accept who they are.

Diana was diagnosed 8 years ago with Usher Syndrome type 2 (still to be confirmed genetically). Born and raised in Mexico, Diana has a Bachelor in Science in Electronic Systems Engineering from ITESM (Mexico), and a Master of Business Administration from Newcastle University (UK). After living in some places in Mexico, Canada and the UK, today she lives in Mexico City, where she works for a top professional services firm as a Deals Advisory Manager. Diana is a passionate reader, traveler, and one of the writers of the book "Walk in my Shoes".

Moira Shea has Usher syndrome 2A. She served as vice chair for the Usher Syndrome Coalition for the past four years. Moira has been involved in the fight to eradicate Usher syndrome for over 40 years.

She served on the Board of Directors for the Foundation Fighting Blindness for 35 years. Moira retired as a federal executive from the US government, which includes 5 years on Capitol Hill.

Moira holds a Master in Public Administration from Harvard University’s Kennedy School of Government. She resides in Washington, D.C. with her husband Christophe Lorrain, guide dog, Finnegan and his partner golden retriever, Asia.