Alternating Hemiplegia of Childhood Foundation Inc

Rating: 4.89 stars   62 reviews

Address:

2000 Town Center Suite 1900 Southfield MI 48075 USA

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.

2015 Top-Rated Nonprofit
Write a Review
Donate
Invite Reviews Share This Nonprofit

See How 3Hrs Can Help

More Info

313-663-7772
http://ahckids.org

Promote This Nonprofit

GreatNonprofits badges allow you to raise awareness of your favorite nonprofits on your own web sites!

Review this charity on
GreatNonprofits

Reviews for Alternating Hemiplegia of Childhood Foundation Inc

Rating: 5 stars  

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.

 
Flag review
Rating: 5 stars  

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.

 
Flag review
Rating: 5 stars  

3 people found this review helpful

This wonderful organization makes a difference. The focus is truly on the kids and their families and they emphasize results, including funding the exciting discovery of the gene that causes the disorder. My niece and her family also rely on the support community to stay strong and manage incredibly difficult daily challenges. AHCF impacts their lives every day.

 
Flag review
Rating: 5 stars  

3 people found this review helpful

My niece has AHC and I've watched the organization steadily grow and mature since her diagnosis. I've had the pleasure to be involved with, and donate to, fundraising activities such as the annual AHC walk and AHC golf outing in the Chicago area. The organization is forthcoming and clear about how the donations are used in the annual update. I look forward to future progress.

 
Flag review
Rating: 5 stars  

1 person found this review helpful

A wonderful organization helping children with this terrible disease.

 
Flag review
Rating: 5 stars  

1 person found this review helpful

AHCF does wonders for the children afflicted with this disorder and their loving families as they navigate the uncharted waters of AHC.

 
Flag review
Rating: 5 stars  

1 person found this review helpful


Our granddaughter was diagnosed with Alternating Hemiplegia of Childhood when she was 10 months old (1991). Very little was known about AHC then and the information available was difficult to find. This prompted our daughter and other parents to form the Alternating Hemiplegia of Childhood Foundation (AHCF).
It has been an eye opener to observe what it takes to get a foundation up and running. The continued passionate commitment and dedication of parents, families, friends, physicians, volunteers over these past 20 years is so very inspiring. And the results have been monumental.
Thank you AHCF. Keep up the good work !!!

Was your donation impactful?

Definitely

How likely is it that you would recommend that a friend donate to this group?

Definitely

How likely are you to donate to this group again?

Definitely

When was your last experience with this nonprofit?

2013

 
Flag review
Rating: 5 stars  

2 people found this review helpful

My son is 19 years old and has ahc. We have been in this fight alone until we found ahc foundation. It is wonderful to be able to talk to when days are hard and ask all the stupid questions which other sometimes laugh or just looked puzzled. We have become more and more involved and would like to have the world know who we are and help with our cause!!! Jenny Renfroe in Roswell, ga

Was your donation impactful?

Definitely

How likely is it that you would recommend that a friend donate to this group?

Definitely

How likely are you to donate to this group again?

Definitely

When was your last experience with this nonprofit?

2011

 
Flag review