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94 Reviews
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August 26, 2013
1 person found this review helpful

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August 26, 2013
1 person found this review helpful

I discovered that my husband had HD five yrs ago . I went to the HDSA web site and was very pleased with all the info I discovered. I have been going to a HD support group ever since. Without having all the info and support that HDSA has to offer I would be more lost.

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

Life-changing

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

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2013

August 22, 2013

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August 22, 2013

My husband was diagnosed with Huntington's Disease at age 73 three years ago, and now his sister, nephew, daughter have all been identified as carrying the gene expansion. We have benefited greatly from the educational materials, conferences, and support of HDSA. The amount and depth of information created for the general public just isn't available anywhere else. While a cure, or even a stabilizing therapy has not been identified, as soon as it is, HDSA will let us know. Thanks for all you do.

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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

How do you feel you were treated by this organization?

Quite well

When was your last experience with this nonprofit?

2013

November 14, 2012

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November 14, 2012

Members of my family have been affected by Huntington's Disease. It is a scary disease with no cure. There is a 50% chace that my sister and I also carry the gene. This organization has been a wonderful resource to our family and friends for the past 12 years. Not only do they provide up to date information, they provide resources for family, friends and care givers. My family is involved in the local support group and participates in the yearly walk to raise money for further research. We appreicate all that this group has to offer.

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

Life-changing

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

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2012

November 13, 2012

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November 13, 2012

My husband was diagnosed with Huntington's disease in 2006. He applied for Social Security disability and was denied. I contacted HDSA in the hopes that they could help. Jane Kogan returned my email within 24 hours with contact information to assist me. The person she referred me to was the FIRST and only person to explain to me the reason for my husband's denial. For over 4 years we were lead to believe my husband would receive disability. HDSA has the right people working for them and with them. They understand the emotional toll this disease takes on the entire family affected by HD. Their tireless effort to bring this devastating disease to the forefront of everyone in America is to be commended and rewarded. Trying to get legislation passed in Congress is a daunting feat in the current political climate, but HDSA has accomplished this! If that doesn't deserve recognization, nothing does!

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

Life-changing

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

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2012

November 5, 2012

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November 5, 2012

The national organization has been very helpful in providing information and support to HD families, and in providing funds for research on treatments for HD. The Arizona Chapter has organized several retreats in Prescott that have been wonderful experiences, giving HD families from all over Arizona a chance to get together. Our Tucson HD support group is an important resource for us, providing counseling and activities throughout the year. We look forward to our monthly meetings and have enjoyed participating in local fund raising activites. The counselor who runs our meetings, Joan Jervis, visits my wife frequently at home and raises her spirits every time.

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

Life-changing

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

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2012

October 24, 2012

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October 24, 2012

when the disease was first discovered in the family, no support systems existed. the manifestation of the disease may cause such shame. as the support system grew, so has education and awareness. the quantity of people at the current support groups is fantastic considering it small start. the society brings hope to families and friends. the attention to the disease is helpful to the patients, families and those at risk.

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

Life-changing

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

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2012

October 23, 2012

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October 23, 2012

My husband has undiagnosed Huntington's. It runs in his mother's family so the rest of the family recognizes he has it but he is in total denial. One of his aunts who was diagnosed committed suicide so we see no benefit to him to push the issue. Huntington's Disease Socitey of America has been very helpful with the information they provide about the disease, how other people deal with it and just general support for us caregivers. I am especially greatful for their efforts to further awareness and research into this disease. When I have an email fron them I am eager for their latest information.

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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

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2012

October 22, 2012

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October 22, 2012

Huntington's Disease runs in my wife's family. Her Grandfather, Father, Uncle, and Aunt all either are currently suffering from or have passed away from it. She has a 50% chance that the gene has been passed on to her and she will develop symptoms herself. This disease is devastating for the people who have it and it is hard on their families and loved ones. HDSA is a source of constant support, providing education to physicians and communities, lobbying for updated laws and policies, raising funds for research towards a cure, and organizing support groups and resources for HD patients and their families. HDSA is the only organization in America that I'm aware of that focuses on Huntington's disease and we are so grateful for all that they do.

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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

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2012

October 22, 2012

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October 22, 2012

I am gene positive for the disease. I have always been treated with the up most respect in every encounter with this great organization trying to do their best to understand the disease.

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

Life-changing

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

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2011

October 22, 2012

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October 22, 2012

I have learned a lot from the Huntington's Disease Soc. Of America. My family has found the organization to be very caring and helpful. The educational aspect is excellent. Ann, MI

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

Life-changing

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

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2012

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