AHC was identified as a disorder in 1971. In the early years, every parent who had a child with AHC was essentially isolated, relying on the physician who diagnosed them to network and connect with other families.
Because of advancing technology, we have made great strides in diagnosis, education, and networking. Today, AHCF can help answer your questions, connect you with other families, and provide resources to assist with daily living.
The AHCF Coordinator is available for guidance and can connect you throughout the Foundation. She can be reached via email or phone:
The foundation can be helpful in the following circumstances:
- 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
- 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
- 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
