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Get Support

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.

Connections

 

Get direct support from a member of our team who 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. Email info@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.

 

 


Emergency Financial Resources

A list of Organizations that help with emergency relief for families.


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 to read their profile.

ALABAMA
Matthew Jones
mdjhuntsville@gmail.com
Victoria Wilkins – vmwilki@yahoo.com

ARIZONA
Kimberly Lauger – kim@kimberlylauger.com

ARKANSAS
Casey Adams – cadams.afcs@gmail.com

CALIFORNIA
Patricia BarrAmazing.abby4@yahoo.com
Victoria Criswellvictoria@criswell5.com
Betsy Marsolanelizabeth.marsolan@gmail.com

COLORADO
Stephanie Schmitzchargecolorado@gmail.com

CONNECTICUT
Ben Daigle – bdctus at gmail dot com

FLORIDA
Katrina Michelkatrinafloridacharge@gmail.com
Donia Shirley-Douglasdoniagshirley@gmail.com

GEORGIA
Michelle Mildermichellemilder17@gmail.com

INDIANA
Kim Kazmirski – brokeydale@gmail.com

IOWA
Ricky Teed – richardteed@hotmail.com
Samantha Teed sammyteed@hotmail.com

KANSAS
Kimberly Freemankansaschargeliaison@gmail.com

KENTUCKY
Sarah Cawthoncawthonmd@yahoo.com

LOUISIANA
Jill Barthe – jillehannan@gmail.com
Fran Hannan (Grandparent) – franhannanslp@gmail.com

MAINE
Sarah & David Irvingseirving@northernlight.org; davidshelterwoodmaine@gmail.com

MICHIGAN
Jodie Beaversjbeavers@shepherdschools.net

MINNESOTA
Judy Cavazos – Beal –  judy.cavazos@gmail.com
Chelsea Winchester – winchester2011.cw@gmail.com

MISSOURI
Kate Smith katepribyl@gmail.com

NEBRASKA
Maria Lindquistmarianecharge@gmail.com
Courtney Schollcourtney.scholl@icloud.com

NEVADA
Penni Echolspenni.echols@gmail.com
Nevada Facebook Group

NEW HAMPSHIRE
Laurie Suter lauries12@comcast.net

NEW JERSEY
Kristine Gargiulo – finncrewco@gmail.com
Heather Hilbmann – heathernjcharge@gmail.com 

NEW YORK
Suzanne Chensuzanne.a.chen@gmail.com

NORTH CAROLINA
Kim Lanekimandmikelane@gmail.com

OHIO
Jenn Kilejennykile@yahoo.com
Katie Susil katiesusil@yahoo.com

OKLAHOMA
Gloria Bowlesgloriab89@yahoo.com

OREGON
Megan Garrison – megan.j.garrison@gmail.com

SOUTH CAROLINA
Minnie Lambertminnie@chargesyndrome.org

SOUTH DAKOTA
Kristin Knutsonkmknutson99@gmail.com

TENNESSEE
Kristi Joneskristitncharge@gmail.com

TEXAS
Kathi Barksdale kathi@centex.net

UTAH
Anne Harveyutahchargeliaison@gmail.com

VIRGINIA
Sondra DeanSondraincharge@gmail.com; sondra.dean@lee.k12.va.us

WASHINGTON
Megan Garrison – megan.j.garrison@gmail.com
Scott Lynn scottmen2003@hotmail.com

WEST VIRGINIA
Jenny Forren – West Virginia jmforren@gmail.com

WISCONSIN
Brooke Fula – Wisconsin brookefula@att.net

SPANISH SPEAKING
Judy Cavazos-Beal – judy.cavazos@gmail.com

If interested in becoming your state’s liaison, please contact Minnie Lambert, minnie@chargesyndrome.org

Find your state Deafblind Project

 

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.

 


 deafblind organizations         family support groups        International groups      other helpful sites

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