The path to your child’s AHC diagnosis has surely been full of unknowns. The life you envisioned has been changed forever. You may be grieving the life you planned and struggling with what happens next. AHCF Family Support volunteers are here to listen to your experiences and share in the daily trials of this complex and unpredictable neurological disorder.
We have experience and resources to support your child and family. We can help you navigate the medical community and provide guidance so you can strongly advocate for your child. Questions and situations will surely arise, and we are here to help. Share your journey by connecting with an experienced parent:
Contact: Vice President of Education and Family Support heather@ahckids.org
Learn More About AHC: Overview
Initial Steps to Consider After Diagnosis
- Connect with Family Support to find a neurologist with AHC experience
- Download Child Neurology Foundation (CNF) Neurology New Visit Toolkit
- Contact your county Early Intervention program (birth-3 years) or local school district (3 years and up) for a developmental evaluation and therapies
- Contact your state’s Medicaid office to apply for waiver programs
- Join the private parent support group on Facebook
- Join AHCF Family Circle Zoom calls
When you register with AHCF, you become part of the AHCF family.
- Receive our newsletter and updates on research
- Receive information on attending our AHCF Family Meeting
- Receive assistance from the AHCF Family Support Team
- Participate in AHCF research and surveys
- Gain access to the most experienced AHC doctors and resources
- Network with other AHC families
