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DES Action USA

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Nonprofit Overview

Causes: Cancer, Health, Public Health

Mission: The mission of DES Action is to identify, educate, empower, and advocate for DES-exposed individuals.

Results: DES Action successfully advocated for continued DES research funding of the DES Follow-up Study carried out by the National Cancer Institute. We stay in touch with the researchers and share their results to inform those who need to know about health risks caused by DES exposure.

Geographic areas served: We are a national organization in the United States but we have members in primarily English-speaking countries around the world.

Programs: Our organization began in 1978 and provides information packets and doctor referrals for individuals exposed to the anti miscarriage drug, diethylstilbestrol (DES). We also have a newsletter providing accurate and timely information of interest to those exposed to DES, as well as a TOOLKIT for so-called DES Daughters (those exposed in the womb) - to help them communicate better with their doctors.

Donor & Volunteer Advisory

This organization's nonprofit status may have been revoked or it may have merged with another organization or ceased operations.

Community Stories

99 Stories from Volunteers, Donors & Supporters

Professional with expertise in this field

Rating: 5

As a therapist , I am happy to have access to DES Action as a resource for my practice . Articles, research and a community for DES daughters and their families. Great reporting And up to date information .

Donor

Rating: 5

Along with physical issues caused by the anti miscarriage drug, DES, come emotional ones as well. My mom carried guilt for years because she did what her doctor told her to do while she was pregnant with me. In good faith she took the pills he prescribed because she so much wanted a baby. Then when I couldn't get pregnant she blamed herself. But DES Action reminded her, and all so-called DES Mothers that it isn't their fault. Greedy drug companies promoted DES to doctors even while knowing it didn't work. Urgggg! I'm grateful DES Action helped my mom understand that drug makers are to blame, not her. I've been a proud donor for many years as a result.

Karen452

Volunteer

Rating: 5

As a DES Daughter, who was fortunate in having two live births, resulting in two healthy children after many worries, anxiety and being bedridden during both pregnancies as a result of my DES exposure, in utero, in addition to many other DES related conditions; I continue to worry about my children and their medical futures, and my mother, who is still living with many medical problems. Research must continue into the 3rd generation and also my generation, with still unknown risks and medical conditions. DES Action has been the one organization that I can trust to get vetted information that is based in research. It also has a wealth of resources on the website, and there is a support group listserve for those who wish to participate. DES exposed individuals are everywhere: I met someone in my gym, at my hairdresser, and at a lecture I attended with 25 people in attendance. Of those 25, 2 people came up to me to tell me of their family's DES exposure: mind you, the lecture was not on DES, but on breast cancer. DES exposure is not rare, yet if DES Action USA weren't there for us, the medical community and community at large would let it recede into the background. It is not a dead issue and DES Action keeps it alive! DES Action is also now going to provide counselors via telephone. This is a much needed service as DES exposed individuals are dealing with medical conditions, diseases and emotional trauma. What of the 3rd generation? The future is unknown and we must continue to rely on DES Action USA to be there for us!

General Member of the Public

Rating: 5

As a daughter of the DES generation, I was always acutely aware of the bullet that I had dodged when I finally learned that my mother had indeed not taken the drug. But not only did that period of uncertainty make me incredibly grateful, but gave me an appreciation for the important role that DES Action has played over the years. And, while that drug has long been taken from the market, it provides a cautionary tale for all of the other "wonder drugs" with which we are constantly being confronted.

General Member of the Public

Rating: 5

Although the DES disaster has slipped from the headlines, its impact on women remains strong--mainly through the daughters of mothers who unknowingly harmed their children with a drug their doctors prescribed. DES Action USA continues to educate the public that pharmaceuticals can--and DO--have significant side effects that must be fully understood before we allow Big Pharma into our bodies.

General Member of the Public

Rating: 5

Learned about DES Action through a friend. It has become an invaluable resource for accurate and useful information. There are two members of my family that have been effected by DES. While direct lines have never been drawn, connecting the dots is clear as one understands the impact on the children of mothers who took DES. The more information is made available through not-for profits like DES Action, the better it bodes for everyone's the future as pharmaceuticals become even more prevalent in our everyday lives.

1

Donor

Rating: 5

My wife and her sister are DES daughters. This has had a profound impact on them and their lives. DES Action has been an phenomenal organization at so many turns in dealing with the multitude of issues they have confronted. A constant resource for them through most of their adult lives. It continues today as an unique resource for so many.

I am overjoyed at the opportunity to donate to DES to ensure its work and its mission.

2

General Member of the Public

Rating: 5

A dear friend recently revealed to me that she is a DES Daughter. Her mother had been given the drug DES while pregnant. This left her with a number of serious medical conditions, including infertility. I discovered DES Action and told her about the kind of support it provides to the DES exposed community. She became a member and says that joining DES Action has provided her with incredibly valuable information about her health.

1

General Member of the Public

Rating: 5

I came across this organization doing a Google search after reading an article about women who have been impacted by DES as their mothers took the drug. It provided a lot of good background info on the synthetic hormone itself and how it can be harmful to women who took it as well as their offspring. The organization is geared toward the children of mothers who took DES and provides resources and a community of people who are also dealing with the aftermath of DES.

1

Donor

Rating: 5

I've been a member for more than 20 years. I depend on it to tell me when there is new information about DES.

1 Deb_59

Client Served

Rating: 5

DES Action continues to provide relevant information, support, and advocacy for people whose lives have been affected by the drug DES. It has been a lifeline for myself and my family since it's inception...which was around the time of the birth of my first child. His prematurely, due to DES, left him severely disabled. Thus DES impacted the physical, mental, emotional, and economic quality of our lives and DES Action continues to provide the tools for us to deal with the devastation that this drug has caused. This organization continues to disperse information, encourage medical research and laws surrounding safe use of pharmaceuticals, as well as provide relevant information to daughters, sons, mothers, fathers, and grandparents around the world.

1

Donor

Rating: 5

This is an irreplaceable resource for any child or grandchild who has ever been exposed to DES before birth. Though DES is not in the news much anymore because OBGYNs stopped prescribing the "better baby pill" after it was discovered (in the early 1970s) that the children, especially the daughters, of mothers given this medication were exposed to high levels of synthetic hormones. And those hormones 15 or more years later led to fatal cancers. There are millions of us still alive who were exposed to this horrible medication. DES Action is one of the few places to which we can turn for support and information. The research coming out of DES studies led to massive changes in what pregnant women are allowed to ingest during their pregnancies. But another big application of this work - which government agencies refuse to deal with - is the amount of synthetic hormones - called endocrine disruptors - we are all ingesting in the pesticides sprayed on all non-organic food. DES Action is immensely important in this fight.

1

Donor

Rating: 5

This site probably saved my life and my sanity. What a powerful nonprofit I completely depend and am devoted to.

4

General Member of the Public

Rating: 5

My wife's best friend is a DES Daughter, which is how I learned about both the drug and this association. I now wonder if I might be a DES son, since my mother had multiple miscarriages during the 1950s, just before and after I was born. Through my wife's association with MedShadow Foundation, I learned about DES Action and I learned from their great resources. Kudos to these tireless volunteers for their work to keep this cause alive for so long.

3

General Member of the Public

Rating: 5

DES Action has all the latest information about what is going on with research. There are so few sources for this kind of information that supporting DES is important to me.

3

General Member of the Public

Rating: 5

DES has affected members of my family. This is the only organization keeping us informed about news and scientific discoveries about the harm DES has on health. It's vitally important to support organizations that report on endocrine disruptors, which are having a grave impact on not only health but the environment.

3 medshadow

Board Member

Rating: 5

I"ve been a memeber for more than 25 years. Its' s the only source I know for reliable, up to date information on the ongoing damages of DES.

2

Former staff

Rating: 5

For over 35 years DES Action USA has been the consistent and reliable source of health information and research findings for those of us are DES-exposed.

Both my brother and I were prenatally exposed to DES; my brother's two daughters are the next generation for whom we await research outcomes. Without DES Action we would have little or no chance to learn about the on-going DES research within the National Institutes of Health by the National Cancer Institute and the National Institute of Environmental Health Sciences.

Beyond advocacy for research and public health education, DES Action USA offers a forum for sharing our experiences with our peers about our DES-related adverse health and reproductive problems. For many of us this is the first opportunity to share our experiences.

We cannot change or cure our DES-exposure, but because of DES Action USA we will not be a forgotten pharmaceutical disaster.

2

Volunteer

Rating: 5

Dear Nonprofits Organization Personnel,

Allow me to introduce myself. My name is Douglas Stevens. I am fortunate to have discovered Sacramento Food Bank and Family Services, specifically their computer lab and computer classes.

I feel fortunate because the computer classes to which I availed myself are on point and are aiding in my increasing daily skills and knowledge of all things computer. Jim and Ed are instructors. They are kind, professional and thoughtful helping computer students navigate what can be challenging and confusing when one is learning computer skills.

What is more, the computer lab is run by Mr. Jamie Estrada-Zambrano. This gentleman is most gracious and professional. Mr. Estrada-Zambrano maintains a very up to date job board. Also, he promulgates new job notices based on his knowledge of our backgrounds, and what a person is seeking relative to future employment. I appreciate his helpful and courteous manner. He challenges to be our best and not give up.

I would certainly recommend Sacramento Food Bank and Family Services to anyone seeking to increase or learn new computer skills. And the computer lab is an excellent place to discover jobs and then apply for them. It is pleasant also to use well-maintained computer equipment. That makes a world of difference.

Regards,

Douglas Stevens
916.671.2787

3

Former staff

Rating: 5

DES Action USA remains a lifeline for those of us exposed to what was prescribed as an anti-miscarriage drug. DES didn't work but caused health issues for the mothers given it, the children born of those pregnancies and their children (and possibly on into future generations).

We are the unwitting guinea pigs showing harms caused by synthetic estrogen exposures. DES Action advocates for vital continued DES research that benefits everyone in a world saturated with environmental estrogens.

But for me, and all others who live with DES - this organizations shares accurate, timely and useful information to help me negotiate the difficult landscape of staying healthy in the face of a synthetic hormone exposure that happened before I was born. I trust what DES Action reports and especially look forward to reading the newsletter. There's plenty of information out there but no other resource I trust as much.