ALTERNATING HEMIPLEGIA OF CHILDHOOD FOUNDATION INC

Rating: 4.85 stars   40 reviews

Issues: Health

Location: 2000 Town Center Suite 1900 Southfield MI 48075 USA

Mission: Our vision is to find the cause(s) and a cure for AHC while providing support to the children with AHC and the parents who care for them
Target demographics: All those diagnosed with Alternating Hemiplegia of Childhood
Programs: Raise money for research to find a treatment and a cure, host a Family Meeting, Educate the medical community and the public, spread awareness through social media, support families, maintain an interactive website for information and resources.

2014 Top-Rated Nonprofit
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Community Reviews

Rating: 5 stars  

1 person found this review helpful

AHCF is an amazing organization; they are a quality foundation run mostly by volunteers. They are 100% committed to all AHC kids and to funding valuable research. It is a testament to their commitment to end AHC-a majority of funds raised go directly to research. In addition to being on the leading edge of research, they are invaluable to AHC families! They have a long history of providing answers and help to families who often had no where else to turn.

When was your last experience with this nonprofit?

2014

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1 previous review
Rating: 5 stars  

Our daughter was diagnosed with AHC at 11 months. Since it is such a rare disease, it is wonderful to have this network of talented, passionate people who are a WONDERFUL resource. The help they are able to give to "new" families is amazing, and they are on THE path to helping all kids who suffer from AHC.

How would you describe the help you got from this organization?

Life-changing

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2013

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Rating: 5 stars  

6 people found this review helpful

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.

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Rating: 5 stars  

1 person found this review helpful

My son who is now almost 25 was diagnosed with AHC at age 6.5. He also has a life threatening seizure disorder. It was a long process of seeing Dr. after Dr. and it had never even been heard of where I live. This foundation was very helpful in supporting us with useful information that helped both us and our Drs. It was great having someone you could talk too and they understood what you were going thru as they were also having similar experiences with their child.My son has been very stable since 1998 and hasn't had a major seizure since then. His episodes of paralysis are infrequent and totally unpredictable. He still walks but his balance is getting increasingly worse and he has very little stamina so uses a wheelchair for walks and outings. Communication is a major problem for him but he has come a long way. He is happy, has a great sense of humor. Please support this organization. We really need this research to help our children.

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Rating: 5 stars  

1 person found this review helpful

My daughter was diagnosed with AHC in October of 2013 at nine months old. A quick google search led me to the foundation. They are understanding and supportive of the children and their families. The fundraising efforts are amazing and with more recognition this group will be unstoppable. Meeting others at the family conference earlier this year was so helpful in understanding this diagnosis and the foundation made that possible. Madelyn's mom, Mt Pleasant SC.

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Rating: 5 stars  

My brother is diagnosed AHC. The most important problem is awareness. There are a lot of disorders waiting to be cured but this one isn't known by people. We should inform the society for diagnosing and curing the disease. Nothing is impossible. Poissiblities are boundaires in our minds. We can cure it. It's just a matter of information.

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Role: General Member of the Public
Rating: 4 stars  

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

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Rating: 4 stars  

1 person found this review helpful

AHC is a very rare neurological disorder that needs money for research and without the AHCF getting money from private fundraisers the AHC patients and their families wouldn't know about the gene mutation that causes AHC to occur in patients.

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1 previous review
Rating: 3 stars  

The AHC Kids Foundation needs your money to find a cure or at least a treatment.

When was your last experience with this nonprofit?

2012

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1 previous review
Rating: 3 stars  

1 person found this review helpful

The AHC Kids Foundation has great updates on its website and Facebook about the kids and research for a treatment or cure.

How would you describe the help you got from this organization?

Some

How likely are you to recommend this organization to a friend?

Likely

How do you feel you were treated by this organization?

Quite well

When was your last experience with this nonprofit?

2012

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Rating: 5 stars  

My daughter Lisa is 13 and has AHC and I am on the fundraising committee. The foundation does great work in striving to help find a treatment and cure to help all the children affected with AHC. The foundation has also set up support groups and is always looking for ways to help the children and families affected with AHC. Please help support the foundation by either donating or spreading the word about the foundation and the disease which affects our children.

Would you volunteer for this group again?

Definitely

For the time you spent, how much of an impact did you feel your work or activity had?

A lot

Did the organization use your time wisely?

Very Well

Would you recommend this group to a friend?

Definitely

When was your last experience with this nonprofit?

2014

Was this review helpful? 
1 previous review
Rating: 5 stars  

1 person found this review helpful

I am a parent and a volunteer on the fundraising committee. My daughter Lisa is 13 years old and was diagnosed at 2 years old after a year of seeing many doctors. And through the the foundation they are constantly updating parents and doctors on progress and research projects going on. We are constantly trying to raise money for much needed research and raise awareness so those in the medical industry are aware of this horrible disorder which affects only 300 known cases in the USA and app 800 world wide. I am so grateful for the foundation and there efforts to find a cure and I have the confidence some day in the near future a cure will be found.

Would you volunteer for this group again?

Definitely

For the time you spent, how much of an impact did you feel your work or activity had?

A lot

Did the organization use your time wisely?

Quite well

Would you recommend this group to a friend?

Definitely

When was your last experience with this nonprofit?

2013

Was this review helpful?