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

Invite reviews

Invite friends and colleagues to share their experiences with this nonprofit
92 Reviews
1234.728265
Previous | 1 2 3 |
Write A Review
September 11, 2013

more

September 11, 2013

My son in-law has HD. This affects his entire family who do our best to provide support. The HDSA does a wonderful job of advocating for the needs of HD victims and their families.

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?

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

August 25, 2013

more

August 25, 2013

HDSA helps people withbHD and their families by in many different ways. : support groups, letting us know about all the research going onand being active in getting bills passed in Congress. Jane Kogan has been a tremendous help in preparing our volunteers to advocate for Senate andHouse bills that will redefine SS outdated definitions of HD and get rid of the 24 month waiting period once a person is accepted for disability. Right now many with HD are turned down when they first apply for disability because if the outdated definition of HD. HDSA heps with training and conference calls when putting on a fundraiser like the Walks for Hope.

Ways to make it better...

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

Give more money from the Walk to research.

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?

2013

August 25, 2013

more

August 25, 2013

I am a daughter who's mother was diagnosed with HD, I knew nothing about it unitl I found this organization. It not only answered the billions of questions I had, but also provided with me emotional support from now friends, it gives me a since of security knowing I am not the only person in the world going through this. This organization in a way saved my life.. I was overwhelmed and ready to give up and they would NOT let that happen. For that I will always be truly thankful. This is an organization that helps people in every way possible. Thank you for all you have done and continue to do everyday. I will always be a proud volunteer HDSA.

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?

2013

August 23, 2013

more

August 23, 2013

My brother was diagnosed with HD in 2006. I started working with HDSA in 2009. There is never enough dollars spent on a disease that is so devastating; however, HDSA does so much more. Helping families cope, providing education to not only families but also the medical community, and helping unite us all in the fight against HD. My family has truly been blessed to have found the support we needed thru HDSA.

Ways to make it better...

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

Spend more money on research

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?

Quite well

Would you recommend this group to a friend?

Definitely

When was your last experience with this nonprofit?

2013

August 22, 2013

more

August 22, 2013

This community needs help and they are very appreciative of any contribution you can make. A WORTHY CAUSE

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?

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

August 22, 2013

more

August 22, 2013

This is a organization that is not like the bigger ones with Celebrity endorsements ect... and is much a family secret... But the organization is so great at working together and bringing awareness to the disease.. Getting people involved in clinical trials and educating the public and medical fields. We are fighting hard to find a cure and to save lives.. I am so proud to be a part of HDSA The Organization has everyone with Huntington's Disease and their families best interest at heart.. They have built relationship with Pharmaceutical companies and Center's of Excellence to help reduce the cost of medication and to have specialist that actually know about Huntington's Disease to provide the Utmost care - there are support groups across the country.. They listen to what we need and strive to reach and support more and more people in need.

Ways to make it better...

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

Have Celebrity Endorsements.

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?

2013

August 22, 2013

more

August 22, 2013

HD affects only a very small sector of the population, but HDSA helps those fighting the disease feel less alone. It has provided great support for my mother, who relies on its support groups and webinars to receive support and information. Being gene-positive, I rely heavily on HDSA's advocacy to encourage the development of a cure before I face the symptoms of HD down the line.

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?

A lot

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

August 22, 2013

more

August 22, 2013

My daughter has JHD and the people at the Rochester Center of Excellence are the greatest. HDSA has been such a great help. I am at this time organizing a fundraiser to bring awareness to my small town and surrounding areas.

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?

2013

October 28, 2012

more

October 28, 2012

This organization really helps HD families with information, awareness, and funding. It is one of the few organizations that helps at all. This organiation rocks.

More feedback...

Would you volunteer for this group again?

Likely

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?

2012

October 28, 2012

more

October 28, 2012

As someone with a family member with HD and a volunteer for this organization for several years, I am very pleased with their help for HD patients and families. Since many people do not know about HD, this organization brings awareness and educational information with many Chapters across the US. Through their affiliation with the Centers of Excellence at major medical institutions around the country, HDSA also brings help and resources to people with HD in their communities. My family member goes to a Center of Excellence on the East coast and receives excellent care. The support groups sponsored by HDSA Chapters also give hope and awareness to families who are affected by HD.

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?

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?

2012

Previous | 1 2 3 |
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