The CHARGE Syndrome Foundation has many ways to offer support and resources to parents, professionals, and people with CHARGE syndrome. Our local, national, and international partners provide an array of services to help the CHARGE syndrome community.
The CHARGE Syndrome Foundation, along with our partners, can assist with finding services and programs such as: new parent support and education, family meetings, sibling and grandparent support, regional and national conferences, partnerships with CHARGE Syndrome Clinics, training for medical professionals and educators, and advocacy. You can start here.
New parents can find out more here.
Get direct support from our Director of Outreach, Sheri Stanger. She can answer your questions and direct you to available resources in your area, including parent contact lists for local families and a list of professionals familiar with CHARGE in your area. Call
1-855-524-2743 (toll free USA and Canada) or email firstname.lastname@example.org.
State Specific Resources
The State Parent Liaison Project is a new model of collaboration to improve the Foundation’s outreach to both families and professionals at the national level. The position will be used to build relationships, network, collaborate and disseminate information.
The primary function of a State Parent Liaison is to:
- Share the latest CHARGE resources with the State Deaf-Blind Projects and the families
- Assist in helping both the Foundation and the State Projects in identifying families
- Update the Foundation on available state resources
- Promote connections among the CHARGE families in the state
Find your liaison: hover over your state on the map or check the list below the map. If your state is not currently serviced by a parent liaison and you are interested in learning more, please email Sheri Stanger at email@example.com.
State Parent Liaisons:
- Maureen Robinette – DE firstname.lastname@example.org
- Alexa Burtley – GA Actkonkol@gmail.com
- Maria Roeters – IL email@example.com
- Sarah Cawthon – KY firstname.lastname@example.org
- Michelle Renae Case – MI email@example.com
- Judy Cavazos – Beal – MN firstname.lastname@example.org
- Kim Lane – NC Kimandmikelane@gmail.com
- Laurie Suter – NH email@example.com
- Mary Cox McDonald – NY firstname.lastname@example.org
- Katherine Bender – OH email@example.com
- Sue Shaffer – PA firstname.lastname@example.org
- Minnie Lambert – SC email@example.com
- Kathi Barksdale – TX firstname.lastname@example.org
- Julie Kelp Ferguson – NJ email@example.com
State and National Deafblind Projects – the state and national projects focused on deafblindness support efforts to train teachers about the unique needs of students who are deafblind. Technical assistance from both state and national Deafblind Projects are the primary way for local districts to get the training and support needed to effectively educate our children.
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