The CHARGE Syndrome Foundation is seeking family volunteers to represent their states or special populations.
Family Liaisons share information with families, the State DB Project, and the CHARGE Syndrome Foundation. All work is done via email, social media and phone, with regular virtual meetings with the Outreach and Engagement Manager and Regional Facilitator. The workload is approximately four hours per month.
The program promotes the Foundation’s vision of “A Better World for People with CHARGE Syndrome” and its mission to lead and partner to improve the lives of people with CHARGE syndrome locally, nationally and internationally through outreach, education and research. This volunteer position helps to build relationships, network, collaborate and disseminate information. It was established to provide families with optimal access to information and resources, enabling them to better advocate for their children.
Requirements:
- Must be a family member or an individual with CHARGE syndrome.
- Must reside in the state you represent and have extensive knowledge of services and resources available.
- Must be a current member of the CHARGE Syndrome Foundation.
- Must have basic computer skills, email skills, and access to social media.
- Must be willing to share information in a timely manner, attend quarterly liaison meetings, and coordinate and share information about activities in your state.
- Commit to serving in the State Liaison role for a period of 2 years.
The following states currently need Family Liaisons:
- Delaware
- Hawaii
- Indiana
- Louisiana
- Maryland/DC Area
- Minnesota
- Montana
- New Hampshire
- New Mexico
- North Dakota
- Rhode Island
- Tennessee
- West Virginia
- Wyoming
If you are interested in becoming a Family Liaison for one of these states, please contact our Outreach and Engagement Manager, Lourdes Quintana Baez.
