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31 Reviews
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October 31, 2012
1 person found this review helpful

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October 31, 2012
1 person found this review helpful

The AHC foundation has provided my family hope and guidance in dealing with my daughter's rare disorder and all the associated issues. The support and knowledge of the foundation is incredible.

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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?

2012

October 31, 2012
1 person found this review helpful

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October 31, 2012
1 person found this review helpful

My grandson was diagnosed with AHC at age 1. We were encompassed by feelings of sadness, concern and fear of the unknown. AHC has provided us with the knowledge, resources and most importantly, a community of people who truly understand.

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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?

2012

October 31, 2012
1 person found this review helpful

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October 31, 2012
1 person found this review helpful

I'm the Medical Liaison and Coordinator for AHCF. i started volunteering for the Foundation in 2003. At the time there were limited resources and information for the families and professionals. We have grown into an active and focused Foundation and have made a concerted effort to raise money to move research forward and recently have found the first gene responsible for the disorder. This affects 70% of the patients, so we are even more determined to find the remaining genes and also research treatments for those affected. At the same time we have increased AHC awareness and education of families, professionals and the public through our website, conferences, literature and outreach efforts. I'm proud to be part of such a passionate and supportive organization.

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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

October 31, 2012
1 person found this review helpful

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October 31, 2012
1 person found this review helpful

It took 9 years before our child was diagnosised wit AHC, we were handed a sheet of paper and told "this is the information I have on this disorder" and the doctor sent us on our way. We reached out to the ACH Foundation who quickly embraced us as part of the family and shared resources that we in turn have shared with our doctors. Dealing with a rare disorder means that the majority of Doctors have no exposure and as a client we are tasked with finding out as much as possible. The AHC foundation has been ground force for us as a family while we learn and deal with our daughter's AHC. Everyone in the Foundation is passionate and willing to help at anytime.

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 30, 2012
2 people found this review helpful

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October 30, 2012
2 people found this review helpful

Would be lost without Ahc. Have been instrumental in providing knowledge of this rare disorder.

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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?

2012

October 30, 2012
1 person found this review helpful

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October 30, 2012
1 person found this review helpful

I have worked with a number of foundations in coordinating academic research support. I have found the AHC Foundation to be committed to supporting research, very thoughtful in how they spend the funds they receive from donors, very engaged in the research they support, and their board members are a pleasure to work with. They do an excellent job of providing both personal support to families and children and bigger picture support to the longer term goals of improving diagnosis and treatment for those with Alternating Hemiplegia of Childhood.

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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 30, 2012
1 person found this review helpful

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October 30, 2012
1 person found this review helpful

The AHC Foundation is a great resource for both professionals in the medical field and families who have a child with this condition. They are a compassionate group of people who work very hard for this community. They help connect families to one another as well as to researchers and physicians who are active in the community. For a small foundation they have continue to make a large impact.

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

October 30, 2012
3 people found this review helpful

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October 30, 2012
3 people found this review helpful

This small foundation has been one of the most effective of its kind in bringing together families in the U.S and partnering with its sister organizations worldwide to promote research and improved clinical care for children and adults with alternating hemiplegia of childhood (AHC). In December 2010, they won a Pepsi Refresh award, which provided the necessary funding to finally find the gene causing this disorder, after a dedicated effort spanning more than 15 yrs. This organization is one to watch. Big in heart, though small in overall dollars, they are a force to be reckoned with.

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

October 30, 2012
1 person found this review helpful

more

October 30, 2012
1 person found this review helpful

My child was diagnosed with this rare condition at age two. We were told there is little to no information about AHC and no cure. We were told our best bet was to contact this family organization, which we did. They helped us on our long and ever-changing, ever confusing journey navigating this condition that effects all aspects of our child's day and our family's day. Eleven yars later after many drs with differing diagnoses, the research recently completed thanks to financial support from this group, gave us the first confirmation that this is in fact the condition effecting our child. This group is truly helping our family.

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

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