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Nonprofit Overview

Causes: Health

Mission: HHF is the only organization in the world dedicated to finding a cure for Giant Axonal Neuropathy (GAN). GAN renders it's victims quadriplegics, dependent on feeding and breathing tubes and typically die in their mid 20's. Before HHF there was no hope and we are months away from stopping the progression

Results: we have done in 4 years and 3M what we were told originally would take 10 yrs and 10M. Have aligned with other Rare disease communities and will have efficacy in helping find a cure for many.

Target demographics: patients with GIANT AXONAL NEUROPATHY around the world. They are born with this and typically die in their mid 20's

Geographic areas served: the world

Programs: Collaborative team of scientist world wide Natural History Study is being conducted at Columbia U. Clinical Trial is to start in 2013 at UNC Chapel Hill

Community Stories

6 Stories from Volunteers, Donors & Supporters

Donor

Rating: 5

From the seeds of a tragedy sprang hope. That is the basis for this family-led charity. Facing a death sentence for their daughter, Lori and Matt Sames planted the seeds which now have HHF on the brink of a scientific breakthrough, fostering hope for all families with children affected by GAN and for those who love those families. HHF has been THE agency for families of GAN since its inception. The work of the charity is based in science, but the force of the charity is based in determination, grit, love and undying support from family and friends and the local communities where these children and families live. Charities like HHF strengthen one's belief in the impossible. No one could ask for a better charity to support.

Donor

Rating: 5

A great organization for a great cause. I'd like to spread the word about it!

Comments ( 1 )

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kelly59 08/22/2013

Thank you for your kind review. I completely agree and we all would like to help make this more well-known. I see you have not been able to volunteer since 2012. there are lots of opportunities so please if you would like to help out contact us. thank you again for your continued support. Kelly, kelly@hannahshopefund.org

2 Tracy33

Donor

Rating: 5

I highly recommend Hannah's Hope for GAN. They are persistent and dedicated to making a change and educating the world about GAN.

1 Jennifer161

Donor

Rating: 5

I had been following Hannah's Hope since it's foundation but I didn't truly see the depth of its impact until I met Hannah this past summer. Hannah is such a bright and positive young lady. It is amazing how much this family has done for her and for all the children with GAN. Just because a disease is rare doesn't mean that no one should try to find a treatment for it. Who knows maybe the treatment for this illness could lead to the discovery of treatments for other illnesses.

1

Donor

Rating: 5

As a member of Hannah’s community, I have been following her life story since first reading about GAN and her diagnosis in the newspaper. I have donated to Hannah’s Hope Fund several times. I know that it is primarily run by family and friend volunteers. I am happy to donate knowing that the funds are going directly to financing a cure for this rare disease.

1

Donor

Rating: 5

Hannah's Hope Fund is a foundation that truly makes a difference in children's lives. It gives hope to children who initially were told there was no treatment, no organization, and no research strategy. As a father of young children, I am moved by the efforts of this foundation and will continue to support them in their quest to find a cure for GAN.