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Hopes Hope

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What I want to do

Hope's Hope wants to ease the burden of families with children suffering from the terminal illnesses INAD, PKAN, and other NBIA disorders.

What matters to me

Hope's Hope wants to help parents afford to stay home with their terminally ill children, to help them navigate through the overwhelming task of finding medical and social services, and to raise awareness about these disorders in order to facilitate quick diagnosis and better medical care.

What inspires me

Hope's Hope is inspired by all the selfless volunteers who help make this organization possible.

Apex, NC USA

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June 14, 2010

I was with a team of people helping to prepare a home that needed to be sold. The family had recently received the devastating diagnosis that their 3 year old daughter had the terminal illness INAD and that within a year she would loose all physical and mental abilities, but that she could be expected to live to the age of 10 yrs old. The family had to sell their 2-story home so they could live in a handicapped-accessible, ranch-style home. Our task was to prepare the home so that it would sell quickly. The family had no extra money after medical expenses took their toll, so the local community stepped in with all types of home-building skills. It reminded me of an ant farm! We were able get the house sale-ready in two days! The family was overwhelmed with gratitude.


The Great!

I've personally experienced the results of this organization in...

As one of the founders and organizers, I've volunteered daily for over 5 years. I'm continually amazed at the heartfelt efforts of all the volunteers that make the service projects and fund-raising efforts such a success.

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What I've enjoyed the most about my experience with this nonprofit is...

showing a family that they are not alone and that people care about their hardships.

The kinds of staff and volunteers that I met were...

compassionate, professional, and motivated.

If this organization had 10 million bucks, it could...

keep families at home (rather than working) during the last months, weeks and days of their terminally ill child's life. It could also complete the diagnostic database that would make diagnosing this unusual disorder easier for parents and doctors.

How frequently have you been involved with the organization?

About every week

When was your last experience with this nonprofit?


Volunteer & I helped a family with a terminally ill child prepare their home for sale.