Oops! You must enter a search term greater than 3 characters.

Invite reviews

Invite friends and colleagues to share their experiences with this nonprofit
94 Reviews
1234.734045
Previous | 1 2 |
Write A Review
August 27, 2013
1 person found this review helpful

more

August 27, 2013
1 person found this review helpful

The Huntington's Desiese Society of America is a superb organization. I attended parts of the conference in Jacksonville with a family friend. Everyone was welcoming, informative. There was a great talent show and the participants, MC and other volunteers there were passionate and enthusiastic about fighting for their cause and raising money to find a cure. I met kind people at the conference and was invited to attend a support group to get more information and be more aware, as I am a teacher. The people there as well as th group leader were welcoming, kind and generous!

More feedback...

Will you volunteer or donate to this organization?

Unsure

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

Life-changing

When was your last experience with this nonprofit?

2013

October 23, 2012

more

October 23, 2012

We need more research to help find a drug that will help people with Huntington's which is such a dipilating disease. Please support the foundation which is full of useful information and keeps us posted with the latest status and updates us on the newest research and information on helping our loved ones with Huntingtons which includes my husband.

More feedback...

Will you volunteer or donate to this organization?

Definitely

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

A lot

When was your last experience with this nonprofit?

2012

October 23, 2012

more

October 23, 2012

I am a 75 year old mother, grandmother and great grand mother and Huntingtons disease came into our lives in 2009. I have been watching and reading these reviews and I am shocked that more and more people are not telling the truth! It only takes you to listen to what their CEO said!! Here is the link and please listen to this radio show like the other reviews said. http://www.blogtalkradio.com/help4hd/2012/03/27/help-4-hd-news-channel-with-louise-vetter

More feedback...

Will you volunteer or donate to this organization?

No

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

None

When was your last experience with this nonprofit?

2009

October 22, 2012

more

October 22, 2012

My wife died from HD (Huntington's Disease). This organization has helped families like mine in many ways such as funding research to find a cure, providing support to caregivers, and increasing the public awareness of this relatively unknown but terrible disease.

More feedback...

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

October 22, 2012

more

October 22, 2012

All of the people I have dealt with at HDSA have been caring and understanding. I have attended several conventions and they have been very inspiring. Its so nice to gather so many people who are going through the same issues my family are going through. Thank you for all that you do.

More feedback...

Will you volunteer or donate to this organization?

Definitely

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

A lot

When was your last experience with this nonprofit?

2012

October 20, 2012
1 person found this review helpful

more

October 20, 2012
1 person found this review helpful

I am a mother of three children who are at risk for this disease HD and lost my husband because he battled it for so long. We live in north Carolina. This is a horible disease!! I am only bringing this up becuase it seems like no one else will or has yet but the HDSA needs to be reviewed about their donations and research that they say they are doing for us in the community. They were just looked at there is a problem with the way they say the money is going to. I did support them and did walks but I will not anymore until the truth comes out. More people are asking questions and want to know what is going on with this company who says that they work for us in the HD community. Please I ask that you look into this.

More feedback...

Will you volunteer or donate to this organization?

No

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

A little

When was your last experience with this nonprofit?

2011

October 18, 2012

more

October 18, 2012

It is very important that organizations for Huntington's Disease be recognized and supported, particularly since this is an always fatal "orphan disease" which genetically runs in families, and therefore doesn't have as much money funneled into it as some of the more known diseases. I have lost most of an entire side of my family due to this devastating disease.

More feedback...

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

October 18, 2012

more

October 18, 2012

My childhood friend got married and had two children. Years into the marriage, her husband was diagnosed and has been getting worse continually - he cannot be the dad to their two young children he wanted to be and can't participate in their lives normally due to his Huntington's. Now the youngest child has been diagnosed. Families like theirs need attention to be paid to organizations such as HDSA in order to help them cope and help to find a cure. I know HDSA has been one of the pillars that has kept them going and I thank them for being a support system for them. It's such a little talked about disease that has such devastating effects.

More feedback...

Will you volunteer or donate to this organization?

Unsure

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

Life-changing

When was your last experience with this nonprofit?

2012

October 18, 2012

more

October 18, 2012

It is just wonderful to watch the progress of HDSA from when it developed out from one of it's origins CCHD. The level of organization from fund raising to encouraging scientific research has been remarkable.

More feedback...

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?

2011

October 18, 2012

more

October 18, 2012

I have worked to fundraise money for research for HD and it always amazes me how extensive the collaboration is in this field. The researchers really have good ties to the donating community and are happy to share their work with us in small talks at fundraiser walks as well as at our annual regional conventions. Very few of the other organizations that I have fundraised for tend to have that kind of personal connection with their donors but HDSA really makes me feel like the work that I do for them, whether it be fundraising or advocacy, really makes a difference!

More feedback...

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

Previous | 1 2 |
Write A Review

Filter by reviewer role:

Support This Nonprofit

Help this nonprofit get more reviews

5 tips for getting reviews

5 tips for getting reviews...

  1. Sending an email to clients, volunteers, donors, board members, and other partners with a link to your profile page.
  2. Putting a link on your Web site
  3. Including a link in your email newsletter
  4. Putting a link in the signature of your email
    Putting a link on your facebook page and status updates
  5. Tweeting out a link to your twitter followers