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Oftentimes families are surprised to learn that there is another child with CdLS living in their state. The Foundation has an extensive network of volunteers called Regional Coordinators (RC), made up of parents and caregivers of individuals who have CdLS. They are able to reach out to you, listen to concerns, provide support, help identify local specialists and resources and connect you with other families. By providing one to one contact and matching families who have experienced similar issues, the stress and isolation an individual family may feel are reduced. Ultimately, the Regional Coordinators further the CdLS Foundation’s goal to enable caregivers to make informed decisions and plan for the affected person’s present and future.
Your RC may also host an informal gathering of families and relatives to provide you with the opportunities to meet others like yourself. We recognize and value the expertise each parent and caregiver possesses and is able to share with one another. The Foundation is there to facilitate your contact with the Regional Coordinators in your state. Please call or email the CdLS Foundation’s Family Service Coordinators for more information.
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