Alternating Hemiplegia Of Childhood Foundation Inc

Rating: 4.88 stars   56 reviews

Nonprofit Issues:

Address:

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.

2015 Top-Rated Nonprofit
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ahckids.org

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Reviews for Alternating Hemiplegia Of Childhood Foundation Inc

Rating: 5 stars  

3 people found this review helpful

As a parent of a 23 yr old son with AHC, I fully understand the tremendous void this organization has filled, and continues to fill, in assisting families through emotional support, awareness of medical advances, ideas relating to solutions for day to day problems on such things as adaptive technologies, how to work with school systems on preparing a useful IEP, navigating the bureaucratic nightmare of medicaid, etc. They work to coordinate medical efforts to find a cure (or keep abreast of potential avenues of research) by working with multi-disciplinary doctors. Being such an extremely rare disorder that receives little attention from researchers, they provide some hope in organizing efforts that can hopefully provide some relief to the afflicted individuals and their families. I have been involved with this organization from its inception and know that they perform a vast array of services that may seem minor but are critical to maintain some degree of sanity and realism to the families. Sometimes just venting is needed, other times they will help hook up individuals with another family that is going through similar issues. With low cognitive skills and often extreme retardation, explaining what is happening to the AHC kid having, for example, a terrifying first experience with menstruation, can lead to feelings of inadequacy, loneliness, and depression. The family conferences that I've attended are always uplifting. Sometimes just reassuring new parents that they can make it through has a profound effect on their outlook. When your average family doctor or pediatric neurologist knows less than the man on the moon about AHC, it is a great relief to get assistance on where to find more information about this disorder. Being able to call and get a cheerful, understanding, and non-judgemental person to help explain what the future may hold or what medicines have seemed to be helpful is a great relief. Before this organization arose, it was not unusual to go through doctor after doctor claiming it's epilepsy (as in the early years with my son) and having him doped up on phenobarbitol despite no evidence of epilepsy on any EEGs. We need all the help we can get. This disorder is unlikely to have a day, week, or month named after it to promote awareness; Bono, any remaining Beatles, or Springsteen are not going to do a televised fundraiser for AHC. Living with it is a lonely ordeal that would be brutal without such an organization. I could go on but....by now I hope you get the point on how important this organization is to a group of kids who are marginalized just because they are few in number, and therefore unlikely to bring fame and fortune to researchers, drug companies, etc.

 
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Rating: 5 stars  

3 people found this review helpful

AHCF has been a lifesaver to me and my family! The tireless efforts to raise funds for research and raising awareness of the disorder speaks volumes about those involved in the foundation. Truly would be lost without them. We can SEE the progress they are making for our kids and adults with AHC!

 
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Rating: 5 stars  

2 people found this review helpful

This is a truly amazing organization. For a group that represents such a small population they do so much great work. Directing the fundraising and research has achieved the discovery of the gene that causes this rare neurological disorder. This discovery would not have happened if not for their leadership.

 
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Rating: 5 stars  

3 people found this review helpful

This foundation provides immense value to families of children affected by AHC.

 
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Rating: 5 stars  

1 person found this review helpful

This organization always keeps me up to date with the process of finding a cure for Alternating Hemiplegia, in which my child suffers from if I need any information they are their to quickly get the information I need for my child Doctor

When was your last experience with this nonprofit?

2015

 
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Rating: 5 stars  

2 people found this review helpful

Alternating Hemiplegia of Childhood Foundation (AHCF) is an amazing organization! Our daughter was diagnosed in 2012 with AHC and we are so thankful that AHCF has been able to help us every step of the way. When your child has a rare disease, often pediatricians don't have enough experience to guide patients. AHCF does a tremendous job with patient and family support, as well as supporting researchers. They do so many fundraisers and direct SO much money back directly to the specialists who have active, ongoing research. It is encouraging to know that people are fighting for our kids.

 
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1 previous review
Rating: 5 stars  

2 people 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  

1 person found this review helpful

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  

2 people 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  

2 people 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: 4 stars  

2 people 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  

1 person found this review helpful

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  

2 people 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  

2 people found this review helpful

My grandson, Zachary, is now eleven years old. He was diagnosed with AHC before the age of one. I am so proud of how my daughter, son-in-law and his four siblings care for him. Zachary keeps going even when his body won't work correctly. It was a relief to know that the money raised for AHC research showed that Zachary's condition is not hereditary. My thanks go to all of the families who have fund raisers to continue research for this rare disease.

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?

2014

 
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