Des Action National
Invite reviews
Invite friends and colleagues to share their experiences with this nonprofit
May 11, 2013
Because of Des Daughter Network, I was made aware of Des National Action, a determined group dedicated to the victims of this menacing and debilitating drug. On their limited budget, they provide a wealth of information, compassion and support. Although I am not affected personally, I have been moved to share my praise for this organization with others who can certainly benefit directly, and others who can help me spread the word and support Des Action National in return.
More feedback...
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?
2013
May 11, 2013
I am not a DES daughter. But I have been involved with this excellent organisation for many years and have seen the hard work everybody puts into helping all those who need advice, empathy and understanding in dealing with this dreadful drug that has affected all aspects of their lives. I have been able to write a book, fictional but built on the facts about Diethylstilboestrol (Stilboestrol ). By producing this book I hope to be able to spread the word for all DES Daughters and Mothers in a way that is a good read and yet gives all the facts without being didactic. Ten per cent of royalties will go to the charity - which is always in need of funding to carry on with the brilliant work they do. Here's the book: http://www.amazon.com/Silent-Trauma-ebook/dp/B00AFZ8CLO
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?
2013
April 5, 2013
DES Action continues to be an amazing little organization. I am consistently astounded what the staff does and the quality of the information provided to the DES community on their small budget.
This organization has been a life-saver for so many affected by DES. They consistently make DES issues a focus of research and it seems that each push results in more findings and the need to keep digging.
More feedback...
Will you volunteer or donate to this organization beyond what is required of board members?
Definitely
How much of an impact do you think this organization has?
Life-changing
Will you tell others about this organization?
Definitely
When was your last experience with this nonprofit?
2013
December 13, 2011
DES Action USA was my saving grace when I found it 13 years ago. Suffering health issues from the effects of my pre-natal exposure to DES they provided the information I had been seeking for years. They are the ONLY organization that serves the DES (diethlystilbestrol) exposed community. They provide support, accurate and un-emotional information about our continued health risks in The VOICE newsletter, doctor lists culled from other exposed individuals, attorney lists and have remained connected to the research community to ensure the DES exposed are not forgotten or overlooked. The organization is as frugal as one could ever imagine. They do so much with a tiny budget - it is truly amazing! DES Action is the only organization that I donate to who's information and communications I read in full every time I get something. It has been a lifeline for my health and my mother's health over the years because of their dedication to continued research and providing accurate information. Our family is so thankful for this organization, which was started on someone's kitchen table in 1978!
More feedback...
Will you volunteer or donate to this organization beyond what is required of board members?
Definitely
How much of an impact do you think this organization has?
A lot
Will you tell others about this organization?
Definitely
When was your last experience with this nonprofit?
2011
November 22, 2012
In 1972, My mother told me I had been exposed to DES in utero and would need to be monitored for life for a variety of health issues. Shortly thereafter my mom found DESAction and I was a member for many years. Over the past 10 years I have found my DES exposure has 'caught up with me' and I have had many health issues to deal with related to my DES exposure. DESAction has been there for me all the way. When I feel so alone and with an uphill battle they have been there for me with up to date information and support. An awesome organization who work tirelessly to help DES exposed women.
More feedback...
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 16, 2012
DES Action National has made all the difference to me over the past year, following a lifetime of feeling totally alone and confused regarding my DES daughter related conditions. My initial contact was warmly received: I immediately was sent pertinent information, in a form I could share with my doctors. The quality and format of this information inspired my doctors to feel confidence in DES Action National too, which is vital, because very few doctors understand as much about DES daughter status as DES Action National does. So this organisation has actually helped me collaborate with my doctors. CThe solidarity I have found in DES Action National forum discussions has been hugely comforting and empowering. The forums are sensitively and scrupulously monitored by knowledgeable members, which makes me feel it is safe and appropriate to join in deeply personal and intimate exchanges on difficult and sometimes embarrassing subjects. DES Action National archives include a wealth of important information in an accessible, digestible form. All in all, it simply isn't possible to praise this organisation more highly. Thank goodness for DES Action National!
More feedback...
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 15, 2012
DES Action is a nonprofit - but more importantly - it's a group of dedicated, caring and compassionate people. The Board of DES Action works tirelessly in the legislative, medical, and education arenas to help people understand the ongoing tragic legacy of those exposed to DES and their offspring, and their offspring. DES also is a very personal network of people helping others to understand our medical issues, share our strength, and come together when another DES tragedy hits. I wish I knew about DES Action a long time ago. I love this organization and get so much from it. Thank you DES Action!
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 11, 2012
DES is a wonderful organization and I am proud to be a member of it. Since finding out I was a DES daughter back in 1975 I felt very alone and unsure what all this meant to my health. Now I depend on DES Action through its listserve and newsletter to keep my updated and informed on what I need to know and what to do with the information. We are unfortunately all 'time bombs' and none of us really knows what the future holds, but with DES Action I feel that I can keep informed of the latest information. The listserve is an important way to find out what other DES daughters are feeling and what problems they are having that are unique to being a DES daughter. I am very thankful for DES Action.
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 11, 2012
I am new to this organization. I have spent my whole life dealing with the effects of DES and have felt alone. I have really enjoyed the sharing of others and the knowledge i have gained.
More feedback...
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
November 10, 2012
My only regret is not knowing of this organization sooner-I am a DES daughter and after years of issues, surgeries and now a full hysterectomy, I am changing my lifestyle, advocating for myself and my needs related to my DES exposure. This will now carry on to my daughters as they will deal with possible ramifications of my DES exposure. What a gem this site is! Knowledge is power! Chris/1961
More feedback...
Was your donation impactful?
Likely
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?
Likely
When was your last experience with this nonprofit?
2012
November 10, 2012
At 45 years old my life was up-ended by a cancer caused by the medication DES that was so rare that experienced physicians at a the University of Minnesota didn't believe it was possible. DES action gave me the tools, information and contacts to make sense of a life changing event. I tell everybody who will listen about the effects of DES, the impact it has on women, and the shameful coverup and continued medical world denial and ignorance of so many affected women and families. There is so much to learn, and when you have to explain to an oncologist at a major universities clinic for gynecology what DES exposure actually does to a body (and not the misinformation they've gleaned from a brief mention in medical school), you know there's a lot of advocacy to be done....DES Action is the only voice I know of doing this work.
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
Filter by reviewer role:
Support This Nonprofit
Help this nonprofit get more reviews
5 tips for getting reviews