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July 23, 2013

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July 23, 2013

I have been involved with the foundation for the last 14 years and am constantly amazed at what a small group of people can achieve when they work together! AHC is not a popular disease, nor are there any famous people promoting our cause and yet year after year thousands of dollars are raised for research! Family meetings are held to support one another. Doctors volunteer their time to be on our medical advisory board. Please consider donating!

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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?

A lot

Will you tell others about this organization?

Definitely

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

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.

More feedback...

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

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3 hours of volunteer time for this nonprofit will...

Research resources, post on social media or solicit sponsors for our Family Meeting or Auction Frog Fundraiser Volunteer