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 sheri@chargesyndrome.org.
Our CHARGE family has experienced the loss of far too many amazing individuals with CHARGE. Every life is precious, and we grieve together as a community. It is important for everyone to know that the loss of a child, grandchild, sibling, relative, or friend does not and should not signal the end of your relationship with the Foundation. You will always be part of our CHARGE family. Please click here to access resources, support groups, and ways everyone in our CHARGE family can help.
CHARGE families are invited to join us for informal conversations with other CHARGE families. For more information click here.
State Specific Resources
The State Family Liaison Project is a 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 Family 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 Minnie Lambert at minnie@chargesyndrome.org.
State Family Liaisons:
Get to Know Your State Liaison. Click on the name below.
Kimberly Lauger – Arizona kim@kimberlylauger.com
Casey Adams – Arkansas cadams.afcs@gmail.com
Patricia Barr – California Amazing.abby4@yahoo.com
Victoria Criswell – California victoria@criswell5.com
Betsy Marsolan – California elizabeth.marsolan@gmail.com
Erin Nokes – Northern California erin.nokes@gmail.com
Stephanie Schmitz – Colorado stephsch4@gmail.com
Ben Daigle – Connecticut bdctus(at)gmail(dot)com
Katrina Michel – Florida katrinafloridacharge@gmail.com
Donia Shirley-Douglas – Florida doniagshirley@gmail.com
Michelle Milder – Georgia michellemilder17@gmail.com
Ricky Teed – Iowa richardteed@hotmail.com
Samantha Teed – Iowa sammyteed@hotmail.com
Kimberly Freeman – Kansas kansaschargeliaison@gmail.com
Sarah Cawthon – Kentucky cawthonmd@yahoo.com
Jill Barthe – Louisiana jillehannan@gmail.com
Fran Hannan (Grandparent) – Louisiana franhannanslp@gmail.com
Sarah & David Irving – Maine seirving@northernlight.org davidshelterwoodmaine@gmail.com
Jodie Beavers – Michigan jbeavers@shepherdschools.net
Judy Cavazos – Beal – Minnesota judy.cavazos@gmail.com
Chelsea Winchester – Minnesota winchester2011.cw@gmail.com
Kate Smith – Missouri katepribyl@gmail.com
Maria Lindquist – Nebraska marianecharge@gmail.com
Courtney Scholl – Nebraska courtney.scholl@icloud.com
Penni Echols – Nevada penni.echols@gmail.com Nevada Facebook Group
Laurie Suter – New Hampshire lauries12@comcast.net
Heather Hilbmann – New Jersey hhilbmann@yahoo.com
Suzanne Chen – New York suzanne.a.chen@gmail.com
Kim Lane – North Carolina kimandmikelane@gmail.com
Jenn Kile – Ohio jennykile@yahoo.com
Katie Susil – Ohio katiesusil@yahoo.com
Gloria Bowles – Oklahoma gloriab89@yahoo.com
Megan Garrison – Oregon megan.j.garrison@gmail.com
Sue Shaffer – Pennsylvania shaffersms@gmail.com
Fernanda Diaz – Rhode Island Ferdiazfd@hotmail.com
Minnie Lambert – South Carolina minnie@chargesyndrome.org
Kristin Knutson – South Dakota kmknutson99@gmail.com
Kristi Jones – Tennessee kristitncharge@gmail.com
Kathi Barksdale – Texas kathi@centex.net
Anne Harvey – Utah utahchargeliaison@gmail.com
Sondra Dean – Virginia Sondraincharge@gmail.com
Megan Garrison – Washington megan.j.garrison@gmail.com
Scott Lynn – Washington scottmen2003@hotmail.com
Jenny Forren – West Virginia jmforren@gmail.com
Brooke Fula – Wisconsin brookefula@att.net
Thornton and Ana Gallimore – Military Gallimore.CHARGE@gmail.com
Judy Cavazos-Beal – Spanish Speaking judy.cavazos@gmail.com
Karin Dagley – Perkins School for the Blind karindagley@me.com
If interested in becoming your state’s liaison, please contact Minnie Lambert, minnie@chargesyndrome.org.
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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