Hannah's Hope Fund For Gan

Rating: 5 stars   22 reviews

Issues: Health

Location: PO Box 130 Rexford NY 12148 USA

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
2013 Top-Rated Nonprofit
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EIN 45-0593226
518 792 1568
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Community Reviews

Rating: 5 stars  

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.

Would you volunteer for this group again?

Definitely

For the time you spent, how much of an impact did you feel your work or activity had?

Life-changing

Did the organization use your time wisely?

Very Well

Would you recommend this group to a friend?

Definitely

When was your last experience with this nonprofit?

2013

Was this review helpful? 
Rating: 5 stars  

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.

If I had to make changes to this organization, I would...

Convince a pharmaceutical company to help develop, test, and make the treatment.

Would you volunteer for this group again?

Definitely

For the time you spent, how much of an impact did you feel your work or activity had?

Some

Did the organization use your time wisely?

Very Well

Would you recommend this group to a friend?

Definitely

When was your last experience with this nonprofit?

2013

Was this review helpful? 
Rating: 5 stars  

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.

If I had to make changes to this organization, I would...

hope that an actor/actress, athlete or politician would champion the cause and help raise awareness

Would you volunteer for this group again?

Definitely

For the time you spent, how much of an impact did you feel your work or activity had?

Life-changing

Did the organization use your time wisely?

Very Well

Would you recommend this group to a friend?

Definitely

When was your last experience with this nonprofit?

2013

Was this review helpful? 
Rating: 5 stars  

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.

Would you volunteer for this group again?

Definitely

For the time you spent, how much of an impact did you feel your work or activity had?

Life-changing

Did the organization use your time wisely?

Very Well

Would you recommend this group to a friend?

Definitely

When was your last experience with this nonprofit?

2013

Was this review helpful? 
Rating: 5 stars  

1 person found this review helpful

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!

Would you volunteer for this group again?

Definitely

For the time you spent, how much of an impact did you feel your work or activity had?

A lot

Did the organization use your time wisely?

Quite well

Would you recommend this group to a friend?

Definitely

When was your last experience with this nonprofit?

2013

Was this review helpful? 
Rating: 5 stars  

I've had the privilege of working with Hannah's Hope Fund as a volunteer after learning about Hannah's Hope as a health care professional. I would volunteer and work and give anything I can to help cure Giant Axonal Neuropathy with this organization of primarily volunteers and people who care about children and this rare disease, and by simple, continual actions and giving, by word of mouth and much hard work have earned the respect and admiration of the local, national and international community and of the professional and research community as well. The theme of Margaret Mead's statement, "Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it is the only thing that ever has." rings true with Hannah's Hope. This is a group that tirelessly advocates for children and young adults with this terminal disease - and through their efforts an amazing, unheard of accomplishment has occurred in just 4 short years - the first of its kind human treatment trial for a cure. There IS hope now for these kids and their family's , who up until now, had no hope. There is a future. In my 25 years of nursing as an RN in different capacities in health care, I have never seen such an advancement in such a short time with such limited resources to start. Millions of dollars have been raised in four years by word of mouth and hard work of volunteers - moms, dads, kids, communities. It is truly miraculous and every penny goes directly to funding the cure and the research specific to G.A.N. I have also had the privilege of meeting beautiful Hannah - her smile, her hope, her encouragement and spirit are life changing for everyone who's met her. The courage and strength of Hannah's mom and dad, Matt and Lori, and their two other daughters, to make this happen for any and all other children and families affected by this rare disease, gives me the strength, hope and determination to keep fighting for a cure as well. I deeply and earnestly respect and and humbled to have any part of helping, donating and being a part of such a great organization and such a great group of people.

Would you volunteer for this group again?

Definitely

For the time you spent, how much of an impact did you feel your work or activity had?

Life-changing

Did the organization use your time wisely?

Very Well

Would you recommend this group to a friend?

Definitely

When was your last experience with this nonprofit?

2013

Was this review helpful? 
Rating: 5 stars  

1 person found this review helpful

I have worked with Hannah's Hope Fund and they are truly appreciative for any help they get - wether it be your time or monetary donation. They are currently in a big fundraising effort to go to clinical trial. Please go to their site and donate whatever you can. All is appreciated! http://www.hannahshopefund.org/donate/

Would you volunteer for this group again?

Definitely

For the time you spent, how much of an impact did you feel your work or activity had?

Life-changing

Did the organization use your time wisely?

Very Well

Would you recommend this group to a friend?

Definitely

When was your last experience with this nonprofit?

2012

Was this review helpful? 
Rating: 5 stars  

1 person found this review helpful

Lori Sames, the Ex. Director for HHF, is an extraordinary woman. With help from her staff of one and amazing friends, family and a supportive community, Lori has accomplished the impossible time and again. I only four years, a treatment for GAN is in sight! I am so proud of this groups accomplishments. Every penny is put to such great use without waste so prevalent in many charities. I gladly support HHF. Please visit their site for more information and you too will want to be z part of this miracle in motion.

Would you volunteer for this group again?

Definitely

For the time you spent, how much of an impact did you feel your work or activity had?

Life-changing

Did the organization use your time wisely?

Very Well

Would you recommend this group to a friend?

Definitely

When was your last experience with this nonprofit?

2012

Was this review helpful? 
Rating: 5 stars  

2 people found this review helpful

I met Hannah in 2011. I was moved by her spirit, the dedication and adoration of her friends, and most of all the perseverance of her mom and dad to find treatment and therapies for this rare, fatal disease. The grace and determination of her parents is unbelievable. Being involved in Hannah's Hope Fund has provided endless opportunities to help teach my kids about compassion and character. My five year-old son emptied his piggy bank and donated its entirety to Hannah’s Hope Fund, and discussed GAN with his pediatrician to ensure he (the doctor) knew what this rare disease was. I spend countless hours every week utilizing social media and researching opportunities for this organization. It is a honor to be part of the world dedicated to developing a cure for GAN.

Would you volunteer for this group again?

Definitely

For the time you spent, how much of an impact did you feel your work or activity had?

Life-changing

Did the organization use your time wisely?

Very Well

Would you recommend this group to a friend?

Definitely

When was your last experience with this nonprofit?

2012

Was this review helpful?