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November 8, 2012

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November 8, 2012

As a DES daughter DES action has provided me with the information I needed to put the pieces of this confusing puzzle together empowering me through information.

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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

November 8, 2012

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November 8, 2012

I learned of my DES exposure rather late in life when my health took a drastic turn. Thanks to the resources of Des Action I became well versed in the terrible side affects that I had been experiencing all my life.As a result I was able to advocate for myself the proper care that was necessary to deal with these life threatening episodes and have found a doctor who is up to date with the risks involved...a rarity these days. It seems to me that the very same drug companies that are so ardently looking for the "cure" are the very same ones who gave us this curse to begin with.The drug companies have done a great job of keeping the past secret. DES Action has been the only active group to keep this alive...The drug companies don't want us to remember...DES Action won't let them forget. Pam.

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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?

2012

November 8, 2012

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November 8, 2012

I'm a 50 year old DES daughter, breast cancer survivor, and mother of a 19 year old DES granddaughter who has already had a benign lump removed. I truly appreciate the up to date information that DES Action provides. I visit the site regularly to find recent research. Thanks for keeping me up to date!

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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 8, 2012

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November 8, 2012

I am a 54 year old DES daughter.who lives and was born in Ontario, Canada. DES Action in Canada closed several years ago due to lack of funding. Because of DES Action National, I am able to connect with other daughters, discuss health issues and keep current on issues that affect us personally. I feel less alone because of this group. We receive a quarterly newsletter "The Voice" and I look forward to receiving it. I can't imagine what would happen if DES Action ever closed, it's totally beyond my comprehension

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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 8, 2012

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November 8, 2012

I was born in the USA in 1951. My mother had already lost two full term babies and, as DES was all the rage, she was put on the drug by her doctor. Mum always had this underlying feeling that the drug was not quite "kosher" and, fortunately, this meant that I had regular examinations from the age of about 17. It became quite obvious in my 20s that my anatomy was DES affected. By my 30s it was apparent that I would not have children naturally. Had it not been for DES Action there would have been no organisation that I could turn to for information. Knowledge is power they say: well in my case knowledge did not give me children but having my circumstances explained with humanity and clearly saved me from deep depression and from spending - more - money on treatments that had only a miniscule chance of working. The Action group has been a constant source of support which I still turn to even in my 60s. My very best to all of you, and great thanks to DES Action.

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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 8, 2012

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November 8, 2012

I was in my 30s when I miscarried, over and over, for reasons I didn't understand until a doctor told me I had the "classic presentation" of a DES daughter. My mother, however, didn't think she'd ever taken this drug. But I remembered being given it as a teenager to stunt my growth--a popular practice in the Sixties, Seventies and Eighties to prevent tall girls from growing "too tall." I turned to DES Action's Pat Cody, the organization's late founder, for help. What was happening to me? What would happen to me? She offered tons of information as well as her own gut feeling about my double exposure to this toxic drug. She was a life-saver. Now DES Action works hard to help mothers, daughters, sons, and grandchildren with the same sorts of questions. DES Action is there to help when those people, like me, need help understanding what this drug has done to them and what they can do to protect themselves in the future. They do not accept money from drug companies, which for decades have denied responsibility for the tragedies DES-exposed individuals suffer.

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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?

2012

November 8, 2012

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November 8, 2012

Diethylstilbestrol DES was a horrible drug. It was prescribed to millions of unsuspecting women without any thought to the harm (cancer, infertility, etc. ) it would do even though there was evidence that the pharmaceutical industry knew it would cause harm. The resultant damage impacted not only the female offspring of these “moms-to be” but also the male offspring and now grandsons.
Were it not for the diligence and tenacity of DES Action and Pat Cody, this type of travesty would likely continue today. DES Action helped me SO much after it was identified that I had been exposed when I was 15 years old.
DES Action is instrumental in fostering continued research and education for those of us impacted. Another example of their phenomenal support is the CDC Awareness campaign to ensure that not only are the victims aware of the repercussions but also the newly trained medical professionals.
DES Action’s reach is worldwide and they deserve funding like no other organization or charity I support!

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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 8, 2012

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November 8, 2012

It's all about education and the truth. DES Action has armed women, men and their children with the most up to date health information on the affects of exposure of his horrific drug. My respect for this organization knows no bounds. We have been fighting the good fight since the 1970's and will continue to do so - as long as there are people who are vulnerable. DES Action has truly written the book on health care advocacy - and standing up to the pharmaceutical and health care corporate interests. Without them the truth would never have been exposed.

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Will you volunteer or donate to this organization beyond what is required of board members?

Likely

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 8, 2012

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November 8, 2012

It's incredibly reassuring to have this organization which provides information on DES issues of all sorts, and advocacy in many arenas for research and actions that improve our lives and health. And day to day, I feel connected to a community of real people who are going through DES-caused medical and emotional issues just like me. I don't feel bewildered, isolated and alone with my own medical problems and questions as I did in earlier years before I had DES Action and its email listserve. Would that every person with a rare medical condition had a group like this! Thanks to all who work to make it so good.

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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 8, 2012

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November 8, 2012

2 of my 4 babies died because i could'nt keep them anymore in my uterus..thanks RÉSEAU DES, i have success to stand tall...

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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?

A little

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

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