We are here to help you navigate your AHC journey.
Whether a family member was just diagnosed or you have been on the AHC journey for years, AHCF Family Support volunteers are here for you. Our team consists of experienced parents of individuals with AHC who understand what you are going through. Connecting with our AHC community becomes an extension of your family. We share in the daily trials of this complex and unpredictable neurological disorder and are here to encourage you on your journey.
When you register with AHCF, you become part of the AHCF family:
- Add your family to the AHCF directory
- 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
Join our Family Directory
Contact family support with questions about daily living, resources, education, and advocacy:
AHCF Vice President of Education and Family Support heather@ahckids.org
Contact AHCF Coordinator for guidance throughout the foundation: AHCFoundation@ahckids.org Phone: (313)663-7772
AHCF Guidance for Daily Living
Helpful information we can provide:
- Letters of need for school, insurance, travel visa
- Connection
- to other families for support or recommendations
- to medical care, therapies, and education
- to families near you
- Share helpful resources
- Volunteer with AHCF in your area of interest
- Provide resources to host a fundraiser
- Publish your story on our website to raise awareness
Significant:
- Educate on genetic testing for ATP1A3 gene mutation
- Family support
- Discuss your concerns, answer care questions
- Answer questions about diagnosing AHC
- Introduce you to the AHC community
- Be available along your AHC journey
Urgent:
- A medical crisis where your medical team needs a consultation with an AHC expert
- This Emergency Room Protocol may help by accompanying your child into the ER, educating doctors unfamiliar with your child and AHC
- Legal situations where an AHC expert is needed
- to diffuse a legal situation – custody, behavior, medical
- to provide confirmation of the sometimes-disruptive symptoms of AHC
- Facilitate end-of-life brain tissue donation should your child prematurely pass away
