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 26, 2013
1 person found this review helpful

more

August 26, 2013
1 person found this review helpful

My brother's partner's (J) mom has HD and it has been heart-breaking to watch it progress over the past few years. J and her brother (& her son) have yet to be tested. Initially I had a hard time understanding why, but the more I have learned, and the more I have talked with J about her concerns, I now get it.
It really breaks my heart to think that any one of them has HD, much less two or all 3 :(
J's whole family is active in HD fundraising and research and I am happy to do what little I can!!!

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?

2013

April 8, 2013

more

April 8, 2013

HDSA provides information to people regarding a rare disease with no cure. The public needs this information so they can show their support to this worthwhile cause.

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

October 31, 2012

more

October 31, 2012

For its tireless efforts to promote the HD cause in Congress, build awareness among the general public, fund cutting-edge research, and support and educate HD families, I recommend the Huntington's Disease Society of America for the Top-Rated Nonprofits List.

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

October 23, 2012

more

October 23, 2012

They are the "ENRON" of NONPROFITS! I used to support them in PA, not anymore! - John

More feedback...

Was your donation impactful?

No

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

No

How likely are you to donate to this group again?

No

When was your last experience with this nonprofit?

2010

October 23, 2012

more

October 23, 2012

I would give 0 stars if that were possible. I have been a donor to the HDSA for years thinking that they were fighting to find a cure for Huntington's disease. they have not done what their mission states and in my opinion they are a fraud and should be investigated by the IRS.

More feedback...

Was your donation impactful?

No

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

No

How likely are you to donate to this group again?

No

When was your last experience with this nonprofit?

2012

October 19, 2012
1 person found this review helpful

more

October 19, 2012
1 person found this review helpful

My name is Rhonda Murphy, and I live in Nashville, TN. I have Huntington's disease and I have already lost two of my four older brothers to this disease. My two sons Nick and Kevin, have a 50/50 chance of getting this disease which is a fatal disease that will have some time to take me down. I've lost my license and cannot
drive due to the loss of the ability handle a car, remember your sense of
accomplishment when you got your driver’s license well, that is just one of
the things this disease has taken from me. My son Kevin moved home from
college to help me at home. My husband Jeff, works at the State of Tn. in
the TDOT, IT dept. The insurance he has is a very vital to our support. I
have already been approved for my disability. Professionally, I was for
over 25 years, one of the first Female, computer programmers in an
environment where this is a male dominated environment . I love to read and attend the monthly support meeting at the Nashville HDSA, that is facilitated by my niece Melissa Hall Darnell.
My youngest brother lives in Austin, Tx, and he has this disease as well. This picture is of me at the HOPE Walk 2011,
I have attended and supported since my DNA results were read in 2010. Now I am an advocate for my fight for this disease and wonderful families who are also fighting the big fight. Keep moving.
Love from, Rhonda

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

October 18, 2012

more

October 18, 2012

They help to educate and inform so many people about this horrible disease. I don't know what my family would do with out them!

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

October 18, 2012

more

October 18, 2012

This is a society that really deserves to be heard about for all of their hard work. I watched both my grandmother and mother succumb to this disease. Even when my mother was in the fight of her life (back in the 2000s), no one spoke about this disease. Oftentimes she was mistreated in public because everyone assumed she was a junkie. However, the scariest aspect of it all, was how closed off from the rest of the world it makes you feel. Because of the health implications, even care givers are fearful of speaking about it out loud. This society is a wonderful place where those touched by this disease can come together and we don't have to be silent. It is a resource I wish I'd had when my mother was still alive. They offer creative ways to donate to their society - either through raffles or flower bulbs as Christmas gifts. They also send out regular newsletters that keep everyone up to date on the latest research in the pipeline for HD. They also send out regular profiles of other people and their struggles with HD. Thank you HDSA, for everything that you do.

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

October 18, 2012

more

October 18, 2012

When one of my best friends was diagnosed with Huntington's Disease we were not sure where to turn. His doctor recommended getting in touch with the Huntington's Disease Society of America or HDSA. I believe they are the only group that helps people with Huntington's and their caregivers. The HDSA offered very informative information for my friend Jimmy and his caregivers. For the last 6 years the HDSA has helped me raise money and awareness to battle this deadly disease. As of this time there is no treatment for HD. The HDSA is committed to helping people with HD, their caregivers and to raising money for HD research. When this disease is cured it will because of all the great work that the HDSA has done.

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

October 18, 2012

more

October 18, 2012

My wife was diagnosed with Huntington's Disease, a horrible neurological degenerative disease, 17 years ago. We've seen her go through many changes, to the point that she is unable to walk, talk, communicate in any way, has severe dementia, is incontinent and a number of other problems. In addition, our two adult children each have a 50% chance of getting this dreadful genetic disease. The ONLY hope for my kids and thousands of others, is that the Huntingtons Disease Society of America receives enough funding and support to find a cure or at least treatment, that will make those suffering or at risk for HD, have hope. I urge you to learn more about HDSA and the work they do. Unfortunately, this is a "quiet" disease that doesn't have a celebrity spokesperson or means to have a significant presence in the public eye. They need your financial support. Thank you.

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

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