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31 Reviews
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July 19, 2013

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July 19, 2013

I am the current president of the AHCF and I have been involved for over 20 years. My daughter was diagnosed in 1991 at 10 months before there was a foundation. It was another year before I spoke to a parent who understood. The foundation provides a wealth of knowledge through it’s website, literature and conferences. The foundation supports families worldwide, assists in connecting families with other families and physicians in their area, raises awareness, and raises funds for research. I will continue to work with AHCF until there is a treatment and ultimately a cure for AHC.

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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?

Life-changing

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?

2013

July 18, 2013
1 person found this review helpful

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July 18, 2013
1 person 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!

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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

November 12, 2012
1 person found this review helpful

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November 12, 2012
1 person found this review helpful

This is an organization working to support families suffering from a severe disease which because of its rarity has not had much support otherwise. The organization also aims to support research in the field to help conquer the disease. I have been with them since the organization was founded in the early 90's and have been thrilled to see them grow in their activities and impact.

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Will you volunteer or donate to this organization beyond what is required of board members?

Definitely

How much of an impact do you think this organization has?

Life-changing

Will you tell others about this organization?

Definitely

When was your last experience with this nonprofit?

2012

November 3, 2012
1 person found this review helpful

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November 3, 2012
1 person found this review helpful

I am extremely impressed with the passion and dedication of the board members of this foundation, and with the care they take to be a well-organized and smoothly-running small nonprofit. They have funded critical research for this rare disorder, research that may not have otherwise been possible, and which has already led to a major advance in our understanding of the genetics of this condition. I expect that they will fund future research providing the best chance for more effective treatments, or someday a cure, for AHC. I attended portions of the family meeting in San Franscisco in June 2012, and was struck by how well the presentations and services seemed to match the needs of the families attending. I am very excited to be part of the medical advisory board of the AHCF.

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Will you volunteer or donate to this organization beyond what is required of advisors?

Likely

How much of an impact do you think this organization has?

Life-changing

Will you tell others about this organization?

Definitely

When was your last experience with this nonprofit?

2012

November 1, 2012
1 person found this review helpful

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November 1, 2012
1 person found this review helpful

Our daughter had been diagnosed with AHC this year, 2012. It s a scary and disheartening experience to be part of a group of families who deal with an extremely rare disorder. AHCF has been a great hub or information of many kinds. Social media, data, networks of families, research, and fund raising. Our family has only been courageous enough to sample these resources, but we have received a great deal of warmth and welcoming from those we have been in contact with. We find the director to be energetic, and passionate about funding himself out of a job. He is supported by capable people who share his enthusiasm. The organization has a contagious energy, that I know we will catch when we develop our courage to do so.

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

A lot

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?

2012

November 1, 2012
1 person found this review helpful

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November 1, 2012
1 person found this review helpful

My niece has AHC. I flew to San Francisco (from Boise, Idaho) to help w/ AHC Annual Convention in June 2012. Any help/volunteering/donating of funds is ALWAYS greatly appreciated as this is a very rare condition.

More feedback...

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?

Life-changing

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?

2012

November 1, 2012
1 person found this review helpful

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November 1, 2012
1 person 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

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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

October 31, 2012
1 person found this review helpful

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October 31, 2012
1 person found this review helpful

Great parent support and very informative. Also provided us with medicine when we ran out. There hasn't been a time when i reached to them for something and have not been responded to in an absolutely positive and helpful way.

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?

2012

October 31, 2012
1 person found this review helpful

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October 31, 2012
1 person found this review helpful

AHC is very rare and difficult to diagnose. Families often feel lost and concerned once their kids get diagnosed. AHCF offers support and education to families and patients in a very professional yet friendly way.

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How does this organization compare with others in the same sector?

Very Well

How much of an impact do you think this organization has?

Life-changing

Will you recommend this organization to others?

Definitely

When was your last experience with this nonprofit?

2012

October 31, 2012
1 person found this review helpful

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October 31, 2012
1 person found this review helpful

I have been personally involved with the Alternating Hemiplegia of Childhood Foundation Inc. (AHCF) for many years as an active AHC research member with the University of Utah under the guidance of Dr. Kathryn J. Swoboda. AHCF is a small foundation made up of dedicated and committed AHC parents of affected children with this disorder and through their time and dedication with the foundation these parents have brought the AHC world together in the USA and internationally. As a result of the many years of supporting research focused on finding the cause for this disease, we now have a gene responsible for this disorder. AHC affected families rely heavily on AHCF as a source of support and for the latest research updates.

More feedback...

How does this organization compare with others in the same sector?

Very Well

How much of an impact do you think this organization has?

Life-changing

Will you recommend this organization to others?

Definitely

When was your last experience with this nonprofit?

2012

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