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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

66 Stories from Volunteers, Donors & Supporters

Donor

Rating: 5

Positive experience with this charity and I will continue to donate.

Donor

Rating: 5

We greatly appreciate AHCF's role in supporting families of children with AHC and helping to find medical support to treat and cure this condition.

2

Client Served

Rating: 5

I was invited to attend a Family Meeting in Indianapolis in July 2016 (I live in Northern Alberta Canada) so I could share our story about our daughter, Danielle, who sadly passed away in 2013 after living for 36 1/2 yrs. with AHC. She was believed to have been the 3rd person in Canada diagnosed in 1979 with this disorder and we clearly charted an unknown path with her. I came away from the meeting having shared our story and having learned so much about the tenacity of the parents and children who battle this disease. The Foundation is made up of an amazing group of people , including parents. They all give so much love and care to each and everyone they encounter. I was a stranger to them but felt like part of the family by the time I left. My one big regret is that Danielle never got to benefit from the incredible work that is being done to fight AHC. She was definitely there in spirit though as I chose to speak on the anniversary of her 40th B-D and she lifted me up. I trust that my message will give the parents the strength to keep going - there will be an answer some day & may God bless everyone who is looking for that answer.

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.

1

Client Served

Rating: 5

Our daughter (22) was diagnosed with AHC six years ago. AHCF has been funding research for this rare disease for over 20 years. Their funding helped medical researchers identify a common gene mutation which led to more research on the brain, molecular models and drug compounds. This work, in helping AHC, may also help other brain diseases. Every two years AHCF organizes a family meeting which connects families from around the world and the medical community. We are grateful to the board - a dedicated set of parents - who make it happen.

1

Client Served

Rating: 5

I am the mother of a 31 year old daughter with AHC. We have recently returned from the family meeting in the USA from New Zealand. How great it was to meet other people wth this condition and to see how hard the board members and parents work to educate and help us in all aspects of this disability. There is a wealth of information they have brought together for everyone to share.

Tobe C.

Donor

Rating: 5

AHCF is an amazing non-profit. It is led by incredibly dedicated parents and focused on making every dollar work as hard as possible for advancing research, understanding, and treatments for this rare disorder. I couldn't be prouder to be associated with them.

Donor

Rating: 5

Responsive and responsible organization dedicated to raising awareness about AHC and supporting research into treatment and a cure. Dedicated staff. Incredible board and volunteers. Very transparent in their financials.

Professional with expertise in this field

Rating: 5

The AHC Foundation has remained committed to kids and adults with AHC for over a decade. They contribute on all levels and continue to help move research forward while serving as a great resource for families and their doctors. It is amazing that such a strong, committed group can do so much for such a rare disorder.

1

Board Member

Rating: 5

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!