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2016 Top-Rated Nonprofit

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This organization's nonprofit status may have been revoked or it may have merged with another organization or ceased operations.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