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Learn More about usher syndrome

What is an USH Ambassador?

An USH Ambassador is a volunteer who is knowledgeable about Usher syndrome and the community, and is willing to be a point of contact in their state or country. Ambassadors educate their community about Usher syndrome and the USH Trust Registry*; provide information and resources; connect with others in their state/country and; may represent the Coalition at community activities such as workshops and conferences.

Ambassadors play a key role in growing our community. Within their states, they are reaching out to agencies and organizations that work with or serve children and adults with Usher, and their families. They are also reaching out to you – individuals living with Usher.

If you'd like to learn more about becoming an USH Ambassador, please fill out a volunteer application.

*The USH Trust registry is the largest international registry exclusively for individuals with Usher syndrome.

Meet Our Ambassadors - USA

Our ambassadors:

AL -email Kathy Thompson

CA -  email Katrina Stanley

FL - email Darlene Laibl-Crowe

ID - email Ashley Stewart

KS - email William Wilkerson

MO - email Al Alvord 

MN - email Maya Larson

MN - email Trevor Turner

MS - email Danay Trest

OR - email Meagan Moore

TN - email John Johnson

TX - email Nilam Argawal

TX - email Valerie Nordstrom

VA - email Tim Chambers

VA - email Megan Lengel

Meet Our International Ambassadors

Canada - email Pam Aasen

India - email Nilam Argawal

Mexico - email Diana Velarde 

Mexico - email Jorge Cantu



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