Families
Family support and family gatherings
Family Support and Family Gatherings
We here at Cure AHC know the struggles families face in caring for their AHC sufferer. We want you to know you are not alone! If you need to reach us with a question, a comment, or just someone to talk to, please contact Stacie Confair our Family Support Lead at stacie@cureahc.org .
Duke multidisciplinary AHC clinic
Duke Multidisciplinary AHC Clinic
Duke Alternating Hemiplegia of Childhood Multidisciplinary Program and Clinic
Cure AHC works closely with Duke Children’s Hospital. On March 6. 2013, they unveiled the 1st ever multidisciplinary AHC Clinic at Duke.
The Duke Alternating Hemiplegia program brings together specialists from various disciplines:
Behavior
Cognition & learning
Motor Skill Development
Nutrition
Neurology
And more
Meet our Doctors!
There are several benefits to AHC patients and their families that the Duke Clinic will provide:
Comprehensive and tailored evaluations of these children to help them and their families better identify the problems they have
A Customized Care Plan to coordinate improved ongoing care with the AHC patient’s local care professionals to maximize quality of life.
Collection of critical data for collaborative research to accelerate discoveries that may lead to the cure for AHC.
Educating families and local caregivers on how to collect needed data in preparation for clinical trials when and if potential treatments/cures are discovered.
Any AHC patient is welcome at the clinic. Cure AHC is working to provide ways to reduce cost of transportation, and will also be able on a limited basis to help work with insurance companies for payment. For appointments or any other questions please visit the Duke AHC Clinic Site, call 919-668-6751 or email dukeAHC@dm.duke.edu
This is the poster Cure AHC & Dr. Mikati Presented at the 3rd ATP1A3 Symposium in Lunteren, Netherlands
You Can Help Sponsor An AHC Family!
Your donation will sponsor families around the globe to pay for travel expenses and medical testing not covered by insurance or state programs. You can help us send up to 50 families to the Duke AHC Clinic! Please make a donation today and help us Cure AHC.
AHC documentary
AHC Documentary
Human Timebombs is a documentary about the most complex neurological disorder known to man. AHC is still not known by majority of neurologists in the world and only a very small percentage of the general public is familiar with rare diseases in general and only a fraction of them know AHC so it´s fair to say that the disease needs a voice and we hope that Human Timebombs will be that voice. We would also like to help researchers and the public to realize that by finding a treatment for AHC we could very possibly find a treatment for other much more common diseases and help millions of people all over the world improve their quality of life.
https://humantimebombs.com/