Disability/Illness Description:

Usher Syndrome is a genetic disorder characterized by moderate to profound hearing loss, and progressive vision loss due to retinitis pigmentosa. Usher Syndrome was identified as early as 1858, and was named after Charles Usher, an early 1900’s British ophthalmologist.


Information and support is available from the following resources:

Usher Syndrome Coalition – Provides information and support to individuals and families affected by Usher syndrome.
2 Mill & Main Place, Suite 418
Maynard, MA 01754
Toll Free: 1-855-998-7437
VideoPhone: 1 (631) 533-9621
978 637-2625
Email Krista Vasik – vasi@usher-syndrome.org or Mark Dunning – m.dunning@lek.com

American Association of the Deaf-Blind (AADB) – Has fact sheets about deaf-blindness, technology and support services.
PO Box 24493
Federal Way, WA 98093
Voice: 301 495-4403
Fax: 301 495-4404
Email: aadb-info@aadb.org

National Center on Deaf-Blindness – A national technical assistance center funded by the federal Department of Education.
Teaching Research Institute
345 N. Monmouth Avenue
Monmouth, OR 97361
Voice: 503-838-8754
Fax: 503 838-8150
Email: info@nationaldb.org

New England Consoritium of DeafBlind Projects – Provides technical assistance to children who are deafblind in Connecticut, Maine, Massachusetts and New Hampshire, as well as to their families and educational programs.
Perkins School for the Blind
175 North Beacon Street
Watertown, MA 02472
Phone: 617 972-7515 or 617 924-5525 (TTY)
Fax: 617 972-7354
Email: NEC@perkins.org
New England Consortium technical assistance

The Foundation Fighting Blindness – Information about inherited retinal diseases, living with vision loss and support groups.
7168 Columbia Gateway Drive, Suite 100
Columbia, MD 21046
Phone: 410 423-0600
Toll-Free: 800 683-5555
Email: info@fightblindness.org

Helen Keller National Center for Deaf-Blind Adults – Provides training in assistive technology, vocational services, orientation and mobility, communication and independent living.
141 Middle Neck Road
Sands Point, NY 11050
Phone: 516 944-8900 or 516 944-8637 (TTY)
VP: 781-257-2000
Email: hkncinfo@hknc.org

Helen Keller National Center for Deaf-Blind Adults – Region 1: New England 
175 North Beacon Street
Watertown, MA 02472
Voice: 617-923-1600
VP: 781-257-2000

Charlotte “Dee” Spinkston

Other Information:

Usher Syndrome – US National Library of Medicine 

Fact Sheet last updated on: 4/17/2020