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40 Reviews
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September 7, 2014
1 person found this review helpful

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1 previous review
August 27, 2013

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... more

September 7, 2014
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.

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When was your last experience with this nonprofit?

2014

August 27, 2013

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.

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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

September 5, 2014
1 person found this review helpful

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September 5, 2014
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.
September 5, 2014
1 person found this review helpful

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September 5, 2014
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.
September 4, 2014
1 person found this review helpful

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2 previous reviews - show all
July 23, 2013

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

September 4, 2014
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.
July 23, 2013

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

More feedback...

When was your last experience with this nonprofit?

2012

November 2, 2012
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.

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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

April 14, 2014
1 person found this review helpful

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April 14, 2014
1 person 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.

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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

September 13, 2013

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September 13, 2013

During infancy, our son displayed abnormal posturing, constant irregular eye movements, and hemiplegia that progressed into frequent attacks of full body paralysis lasting for days at a time. As months passed, he was frequently misdiagnosed and received numerous tests that all came out normative. It took over two years to get a definitive diagnosis for our son and by the time he was finally diagnosed, our parenting had been in question and we felt defeated.
The day we heard he had AHC was bittersweet. For once, we had a medical professional that believed us and knew what was going on with him. At the same time, we were told that due to the rarity of the disease, only one treatment option was available and there would be no guarantee it would be effective at all. The relief of identifying the problem was overshadowed by many more scary and unanswered questions.

It wasn't until we came in contact with the AHCF that the feelings of loneliness and hopelessness slowly started to fade. We were able to have a support system of individuals who knew exactly what we were going through. Without them we wouldn't have had the opportunity for genetic testing that finally identified the mutation causing our son's disorder or known the treatment options available to our family.

The volunteers and individuals that make this foundation are amazing. They are proactive at increasing education and awareness, offer support, and truly care about all the children affected with the disease.

More feedback...

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

August 26, 2013

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August 26, 2013

We spent the first 10 months of my daughter's life in and out of hospitals and emergency rooms. No one could explain the mysterious and frightening eye movements, loss of one side of her body and even losing the ability to hold her head up and swallow. She was treated for acid reflux for 10 months. We were ordering formula through a pharmacy at $40 a can, taking prevacid and Zantac but these episodes continued. A couple of EEGs and MRIs showed no seizure activity. As a mother, I knew something was wrong. My daughter was diagnosed with AHC in December 2012. We were scared, relieved, and confused. Doctors told us there was no real treatment and only about 300 cases in the US. We should contact AHC foundation for help. This foundation was all we had for support and answers. Everyone involved with this foundation bas been so helpful and all are dedicated to find a treatment and hopefully a cure. I've met and spoke to other moms who know exactly what I've been through and can share my pain and frustrations. Our kids with AHC are one in a millon and so is this foundation!!! With a little recognition and extra support this foundation would be unstoppable!

More feedback...

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

August 10, 2013

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August 10, 2013

My 22 year old son has AHC. This foundation has supportive to us since he was properly diagnosed at age 6. They have helped through offering advice and assistance. The people are awesome!!! We ask everyone to donate to this worthy cause.

More feedback...

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

August 6, 2013
1 person found this review helpful

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August 6, 2013
1 person found this review helpful

AHCF is the most dedicated group of parents I have ever had the pleasure of associating with. From the first phone call 11 years ago to now President of AHCF Lynn Egan, when my daughter Lisa Marie was first diagnosed to today, they have always been there to support, answer our questions and or find someone who can, or just listen as we cry over how devastating this disorder is.They are non stoppable in their quest to find the resources we so desperately need to find a cure for this rare and debilitating disorder. I Thank You all!

More feedback...

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

July 18, 2013
2 people found this review helpful

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July 18, 2013
2 people found this review helpful

My Granddaughter, Melody, was diagnosed with AHC at 18 months (Sep 2012).


She has had some issues with muscular contractions / stiffening / limp in her arms, legs, eyes, and mouth since birth, but nothing that anyone could document well or even diagnose. One doctor told us that she
had a lazy eye and not to worry about it.

At six months she had a full body episode (she had no head control, she was unable to move her arms and legs like she was supposed to and was having difficulty swallowing due to her tongue pushing food back out like a newborn) and this was a child that had been trying to crawl just the night before. Her hospital stay was one week and EEG, MRI's etc. gave no answers. She "snapped" out of it and she was sent home with anti-seizure medication. On this medication she had more episodes and while they were not as drastic as the full body episode, she still would lose control of an arm or leg or both which was very frustrating for her as she was determined to be "normal". We took her off the medication and while the episodes didn't quit they became less frequent and were minor.

During this time we searched the internet for something that could point us in the right direction as the Doctors were as baffled as we were. We found many things that didn't quite fit and the doctors ruled them all out.

At twelve months she had another major episode like the one at six months. Again, no answers despite massive testing.

At this point I must say that her neurologist was WONDERFUL and continued to do research trying to figure out what was wrong with Melody.

When she had another major episode at 18 months, her neurologist again walked us through all the symptoms and asked numerous questions about her minor episodes as well. It was then that she was able to diagnose Melody with AHC.

It was wonderful to finally have a name and the beginnings of an understanding of this genetic condition, but the find out that there was no cure and not much research was disheartening. Sometimes it's not so great to be a "One in a Million Kid".

Further research brought us to the AHC Foundation where there was a wealth of information and better yet, we discovered other families who were going through what we were. We weren't alone in this!

Melody is now 27 months old and while she had another major episode a few weeks ago. We are able to handle it so much better because we now know what we are dealing with.

We have spread the word about AHC to all our friends and relatives and hope to continue educating people about this condition and help raise money for further research and perhaps someday, a cure!

We would still be in the dark about this condition if it weren't for the AHC Foundation. Keep up the great work!

Ways to make it better...

If I had to make changes to this organization, I would...

No changes just keep those updates coming!

More feedback...

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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