Meet Megan

Megan O’Neill, born with a moderately severe hearing impairment, was studying to be an architect at the University of Kansas when it was discovered that an increased difficulty with her vision was due to Usher Syndrome. Now Megan is considered legally blind, and her vision continues to rapidly deteriorate.

Learn more about Megan and how you can help in finding a cure for Usher Syndrome.

Forum

How did you find out?

Well let’s start with the standard question many of us with Usher Syndrome are asked – How did you find out Read More

Welcome to The Megan Foundation Forum

Welcome to The Megan Foundation forum, a forum devoted to discussions related to Usher Syndrome. Ask questions, post information, and follow Read More

Usher Syndrome

Usher syndrome is an inherited condition characterized by hearing impairment and progressive vision loss. The vision loss is due to retinitis pigmentosa (RP), a degenerative condition of the retina, and usually appears during adolescence or early adulthood. Balance may also be affected. Symptoms vary from person to person and progress at different rates.

Researchers funded by The Foundation Fighting Blindness (FFB) are studying causes and potential treatments for Usher syndrome and other retinal degenerative diseases. Excellent progress in research has been made recently.

There are at least three different forms of Usher syndrome. People with Usher syndrome type 1 (USH1) are usually born with severe hearing loss and experience Learn More

Blog

Heart to Heart

It’s a blessing when you have an opportunity to be out with the people you love being around and can enjoy an experience of feeling truly connected Read More
How did you find out?

Well let’s start with the standard question many of us with Usher Syndrome are asked – How did you find out you had Usher Syndrome? Please feel Read More
My Fluttering Heart

Trips to the Mayo Clinic have become a routine aspect of my life. Every two months I travel with my mom to the clinic to receive steroid Read More
Unseeing

I read a book recently called “The City & The City,” by China Mieville. It’s about a detective working on a homicide case in a city that Read More
Welcome to The Megan Foundation Forum

Welcome to The Megan Foundation forum, a forum devoted to discussions related to Usher Syndrome. Ask questions, post information, and follow conversations to find out more about Read More
Just gotta be patient

I wanted to share a link to a website about an architect who went blind after having surgery for a brain tumor. Chris Downey has been able Read More
Just look and see

I think one of the most difficult things I struggle with as I lose my vision Read More
Take a walk in my shoes

A very cute yet enlightening video about living with a disability in an accessible world. It’s a French video, but you’ll get the idea… http://www.youtube.com/watch?v=EVV_I-FHNTg Read More
Have you heard?

Have you heard the good news about my Mayo visits? If you haven’t, allow me to elaborate. If you have, allow me to elaborate once more. As Read More