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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

22 Stories from Volunteers, Donors & Supporters

Volunteer

Rating: 5

I have met Hannah and her lovely family through some volunteer work I did a few years ago, helping with publicity and flyers for an event. HHF is different from other non-profits in that all members of their organization go above and beyond every day to make a difference in the lives of children with GAN - and in that they have succeeded far beyond their expectations. Their clinical trials and approach to collaborating with doctors and researchers, both domestically and abroad, is groundbreaking, and will have a lasting impact on the nonprofit industry. I consider HHF an inspiring organization and encourage everyone with an interest to contribute in any way they are able.

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.

Debbie93

Volunteer

Rating: 5

Hannah's parents started this fund and brought together the GAN community giving families a voice, a friend, and hope. They and their many volunteers have worked to raise money and help start a treatment plan for GAN. Hannah's parents found any researcher who had worked on GAN and made a team of scientists committed to one goal. I have known Hannah's mother for over 20 years. My family and I have participated in various events, and championed a fundraiser with our 4H group to help Hannah's Hope. I do this because I can and I have seen how hard Hannah's parents have worked to in such a short time to raise so much money and get as far as they have with a treatment. They do this for Hannah and for every other person with GAN and their families. Amazing.

Bethany K.

Professional with expertise in this field

Rating: 5

Funds go directly to scientists looking for a cure for GAN. A great charity!

Kathy118

Client Served

Rating: 5

As the mother of two of the children affected by GAN, I am extraordinarily grateful for Hannah's Hope Fund and all that they have achieved in the fight to cure this horrible disorder.

As I watch my daughters struggle with the effects of this disorder, with no promise of it ever improving without medical intervention, I consider myself blessed to benefit from the work done each day by Lori Sames and Dr. Gray to find a cure that will stop the deterioration I see in my children.

Bethann S.

Volunteer

Rating: 5

I became affiliated with Hannah's Hope Fund in 2008, shortly after it became incorporated. Over the years, I have been a volunteer and chair at many of the HHF events. My family has become involved in the charity and love that it is a grass roots organization that our community has embraced.

Volunteer

Rating: 5

This group is a total grass roots group that is working very hard to get the help that their child as well as all other children with Gan the medical help they need. This is an orphan disease so it doesn't get any funding and all research is funded by the money they raise. This is a great group and one that I will continue to help in any way that I can. I have been fortunate enough to meet Hannah.

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

1

Volunteer

Rating: 5

I had the wonderful, accidental pleasure of meeting Hannah while volunteering at a Serious Fun camp. Touched by her story, I did a quick search and found out all of the amazing work that her family, friends, and volunteers are doing to help Hannah and children like her around the world with Hannah's Hope Fund. Hannah's Hope Fund is currently working to find a cure for GAN, has raised millions of dollars and helped countless of people who were told that there children no longer had hope. Everyone I have met within HHF is kind, ridiculously hard working and inspiring. How could you not want to take part in such a cause? I would recommend it to everyone, and to be honest, I've already started doing so!

General Member of the Public

Rating: 5

Great organization - so happy to participate in their efforts