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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

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

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.

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

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

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