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April 5, 2013

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April 5, 2013

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.

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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

November 19, 2012
1 person found this review helpful

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November 19, 2012
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/

More feedback...

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

November 13, 2012

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November 13, 2012

I have heard about HHF from a friend and the good work they are doing. I support their efforts in finding a cure for this disease.

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Will you volunteer or donate to this organization?

Likely

How much of an impact do you think this organization has?

Life-changing

When was your last experience with this nonprofit?

2012

November 13, 2012

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November 13, 2012

I share HHF's goals for finding a cure for GAN. I hope they find the funds needed to continue their efforts.

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Will you volunteer or donate to this organization?

Definitely

How much of an impact do you think this organization has?

Life-changing

When was your last experience with this nonprofit?

2012

November 12, 2012
2 people found this review helpful

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November 12, 2012
2 people found this review helpful

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

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Was your donation impactful?

Definitely

How likely is it that you would recommend that a friend donate to this group?

Definitely

How likely are you to donate to this group again?

Definitely

When was your last experience with this nonprofit?

2012

November 10, 2012
1 person found this review helpful

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November 10, 2012
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.

More feedback...

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

November 9, 2012
1 person found this review helpful

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November 9, 2012
1 person found this review helpful

Praise God for the work they have done and are doing. My two granddaughters are children with GAN and hopefully their work will help them live longer more productive lives.

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How would you describe the help you got from this organization?

A lot

How likely are you to recommend this organization to a friend?

Definitely

When was your last experience with this nonprofit?

2012

November 8, 2012
1 person found this review helpful

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November 8, 2012
1 person found this review helpful

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.

More feedback...

Was your donation impactful?

Definitely

How likely is it that you would recommend that a friend donate to this group?

Definitely

How likely are you to donate to this group again?

Definitely

When was your last experience with this nonprofit?

2012

November 7, 2012
1 person found this review helpful

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November 7, 2012
1 person found this review helpful

I have been involved with this nonprofit for years now and still amazed daily at the accomplishments met. In just 4 short years the organization, which is a primarily family and volunteer driven, has done what they were originally told would take 10 yrs and 10M. This Charity brings 'fighter moms' and rare diseases to a new level. These families are amazing and these kids are precious. Thanks to Hannah's Hope Fund they now have hope where there once was non.

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How does this organization compare with others in the same sector?

Very Well

How much of an impact do you think this organization has?

Life-changing

Will you recommend this organization to others?

Definitely

When was your last experience with this nonprofit?

2012

November 7, 2012
1 person found this review helpful

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November 7, 2012
1 person found this review helpful

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.

More feedback...

Was your donation impactful?

Definitely

How likely is it that you would recommend that a friend donate to this group?

Definitely

How likely are you to donate to this group again?

Definitely

When was your last experience with this nonprofit?

2012

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