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56 Reviews
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May 11, 2013

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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

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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

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1 previous review
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. ... more

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.

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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!

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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

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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.

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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 16, 2012

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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!

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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 15, 2012

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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!

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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

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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.

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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

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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.

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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

November 10, 2012

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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

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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

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November 10, 2012

As a DES Daughter born in to an ethnic family, at home I heard "Don't tell anyone! No one will want to marry you!" DES Action and its members in my hometown were a lifeline for me in those early days as a source of invaluable information and support. I am proudly serving on the Board today as a way to give back a little of what I have been given from this transformational organization.

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?

2012

November 10, 2012

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November 10, 2012

Those of us who were exposed to DES in utero have a variety of health issues, causing us to be affected physically and emotionally. While a little knowledge can be a dangerous thing, DES Action is the antidote to that. The organization provides us with the most up-to-date information so that we can make informed decisions, as well as giving us a safe place to share our experiences with others who understand what we are going through. They are tireless in their efforts, and the support I feel as a DES daughter is incalculable.

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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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