I have been on the board for over 15 years. The board is made up of volunteers who have children with the disorder and work incredibly hard to increase awareness. The support the organization provides to families is incredible with a family meeting in different places across the country, bringing doctors and families together for support. There is only one part time employee who handles the administration and acts as medical liaison. The rest of the money raised goes to research and family support. A small organization with a very big heart!
I have been involved with the foundation for the last 14 years and am constantly amazed at what a small group of people can achieve when they work together! AHC is not a popular disease, nor are there any famous people promoting our cause and yet year after year thousands of dollars are raised for research! Family meetings are held to support one another. Doctors volunteer their time to be on our medical advisory board. Please consider donating!
This is an organization working to support families suffering from a severe disease which because of its rarity has not had much support otherwise. The organization also aims to support research in the field to help conquer the disease. I have been with them since the organization was founded in the early 90's and have been thrilled to see them grow in their activities and impact.
I'm the Medical Liaison and Coordinator for AHCF. i started volunteering for the Foundation in 2003. At the time there were limited resources and information for the families and professionals. We have grown into an active and focused Foundation and have made a concerted effort to raise money to move research forward and recently have found the first gene responsible for the disorder. This affects 70% of the patients, so we are even more determined to find the remaining genes and also research treatments for those affected. At the same time we have increased AHC awareness and education of families, professionals and the public through our website, conferences, literature and outreach efforts. I'm proud to be part of such a passionate and supportive organization.