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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.

Director of Outreach

 

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.

 

 

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 Minnie Lambert at minnie@chargesyndrome.org.

State Parent Liaisons:

Get to Know Your State Liaison. Click on the name below.

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.

Do you want to connect with parents in the CHARGE community, to share information and find support? Join our free weekly CHARGE Syndrome Tele-Support Group! Open to parents/guardians from the USA, Canada and other countries. Meet by phone with a wonderfully supportive group in a caring environment. Interested? Contact Sheri Stanger, Director of Outreach, The CHARGE Syndrome Foundation, 1-855-5CHARGE (855-524-2743) or sheri@chargesyndrome.org. A program of Lighthouse Guild.

 

 deafblind organizations         family support groups        International groups      other helpful sites

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