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Nonprofit Overview

Causes: Health, Specifically Named Diseases, Specifically Named Diseases Research

Mission: Through research, education and family support, we have ONE MISSION: END AHC. Our mission is to find the cause(s) of AHC, develop effective treatments and ultimately find a cure, while providing support to the families and children with AHC by funding research to accomplish these goals. Secondarily, we strive to promote proper diagnosis, educate health care professionals, the public and related organizations, encourage the worldwide exchange of information and advance the development of an international database of all AHC patients.

Results: We have grown from a grass roots organization to a global foundation, helping families around the world with AHC. We have the largest database of AHC families in the world including a biobank and Red Cap database. We are recognized as the leader in AHC research and Family support and are always looking for ways to improve our presence and fulfill our mission.

Target demographics: All those diagnosed with Alternating Hemiplegia of Childhood

Direct beneficiaries per year: 1) AHC families by directing them to available resources, connecting them to experts in the field, and providing them with the most up to date information available regarding AHC research and advances for daily care of an AHC patient, 2) School and Health care professionals by educating them about AHC, 3) Researchers by providing over $250,000.00 in grants to move the research forward.

Geographic areas served: The United States

Programs: 1) Raise money for research to find a treatment and a cure, 2) Host a Biennial Family Meeting, 3) Educate the medical community and the public, 4) Spread awareness through social media, 5) Support families, 6) Maintain an interactive website for information and resources.

Community Stories

7 Stories from Volunteers, Donors & Supporters

Nicole167

General Member of the Public

Rating: 5

My best friend's daughter has AHC, and I have been very impressed with the support and information your organization provides, not to mention the research and advocacy it engages in on behalf of those with AHC.

3

General Member of the Public

Rating: 5

This organization works day and night to better the lives of those suffering from AHC. Our community grows each year because of the outreach done by everyone of the all volunteer staff and board members.

3

General Member of the Public

Rating: 5

My best friend's daughter was diagnosed with AHC three years ago. It seemed as though her diagnosis took a long time after many doctors visits. The pediatricians had a difficult time diagnosing this rare disease. AHCF helped my friend's daughter and her family with information, emotional support, and hope for her future through research for a cure. I'm very grateful AHCF has been such a wonderful resource for this sweet little child and her family.

1

General Member of the Public

Rating: 5

I have only known about this great organization for a few years. But be assured that the Alternating Hemiplegia of Childhood Foundation (AHCF) does exactly what it claims to do…..help children with AHC and their families cope with the diagnosis, finding help amongst the AHCF community, raising awareness, and raising funds that almost entirely go toward research in finding a cure. I can’t say enough positive things about the people who serve the cause and work so hard to make life better for those afflicted with AHC. They give a priceless gift to those children and their families….the gift of hope.

Previous Stories
7

General Member of the Public

Rating: 5

Our granddaughter, Kathryn is now 3 1/2 years old and was diagnosed with AHC within the first year. It goes without saying that we love her completely, but what we didn't expect to feel was such admiration as we watch her cope with seizures and trouble getting her body to do what she wants. She battles through and keeps on going, expecting to do what her older brother does, and not asking for any special treatment. Her "can do" attitude comes directly from her parents who watch over her, love her, but allow her to explore the world around her and interact with it, not just watch it. All of us have benefited from the AHCF family and their untiring efforts to find a cure for AHC AND provide a network of information and caring people to support the kids and their families.

2

General Member of the Public

Rating: 4

Alternating Hemiplegia of Childhood Foundation (AHCF) is an awesome organization! AHCF provides many opportunities for families and friends to learn about the condition and resources to help. The forums they provide at their fundraisers are very welcoming and safe. They amount of contact they provide with experts in the field is great for families who have so many worries and questions. My Niece was diagnosed in 2012 and is doing as well as she can because of her parents and the support they found in this organization.

1

General Member of the Public

Rating: 4

Our daughter recently got diagnosed at nearly 7 years old and the AHC foundation provides up with a great network of families as well as the most current information about AHC. We have a lot to learn and we rely on this support network to help us along.
Payne/Parrill