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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.

Community Stories

109 Stories from Volunteers, Donors & Supporters

Volunteer

Rating: 5

DES Action USA has been the best source of health and advocacy information for me and my family for decades. I trust DES Action!

Advisor

Rating: 5

I've seen firsthand how invaluable DES Action USA is to the millions of DES exposed individuals across the nation. The organization keeps the DES-exposed community up to date on everything from doctor's lists to the latest research and ways for DES exposed individuals to connect with and support one another.

Previous Stories
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.

Client Served

Rating: 5

DES Action USA is an outstanding organization bringing much needed news, updates & research information to those who have been exposed to DES, a hormone thought to prevent miscarriage in the 1950's, 60's and 70's. This drug , prescribed to millions of women worldwide has caused devastating ill-effects to the offspring born to these women., including rare uterine & cervical cancer, infertility, breast cancer, reproductive organ malformations. I have found this information monumental & necessary to those exposed to this so-called "wonder-drug". Its one of the very few organizations providing referrals, supportive personnel and research information gained by various professionals.--Christine

Laura Schlesinger M.

Donor

Rating: 5

I have been a member since 1979 and helped to start both DES Action, Connecticut and DES Action, Los Angeles. This great group taught me what support can mean to a person stunned by the news that your mother took a drug while pregnant with you that could harm you. DES Action has been there with information, advocacy, training, mentoring and so much more. My own journey has included infertility, a miscarriage, endometriosis, a hysterectomy at 30 and breast cancer. DES Action has helped with each. I would give them six stars if possible.

Volunteer

Rating: 5

I am a DES daughter, and have several health issues, this website is a great rescource for information as we all try to find a link or understand our health issues. As I am on disability now I would love to volenteer. The more I read the more I know about what is in the future for my kids and the effects that DES have on them and their children. Thank you for all the info.

Kimberly Bechard W.

Client Served

Rating: 5

I was so impressed when I found this website. It is a tremendous resource as well as support system. I emailed and asked for the Maine Doctors List as had not been feeling well and did not realize the amount of information available. It is horrible that this drug has caused so much pain for people who took it, having no idea that it didn't even work. It was a money maker for the drug companies. My mother took DES when she was pregnant with me and I believe it was later on in her pregnancy. I was premature at 36 weeks. She had two miscarriages following and was heartbroken, especially when a nurse botched an opportunity (flushed the specimen instead of sending for analysis as her dr. had ordered) that would have allowed her to obtain more specific information. After reading the available information, I can't help but wonder if there was anything "wrong" with my mothers ability to carry a child or if it was caused or worsened in relation to her DES ingestion while pregnant with me.

General Member of the Public

Rating: 5

I am a DES granddaughter. I just became aware a few months ago when I started having several health issues. I found this site, and watched all of the videos, and downloaded what I could for my family. I also reached out to the listed contacts, asked questions, and they answered so quick! I'm going through extreme financial hardship, so they allowed me to request a scholarship membership in order to have access, and receive "the Voice" mail outs. I'm so amazed at the care and concern expressed through our emails and phone calls. They are TOP NOTCH!

Desdaughterny

Client Served

Rating: 5

I am a DES daughter born 1969. Over the years, DES Action has been an invaluable resource of the latest research and scientific findings, answers to questions, an informative newsletter, and wonderfully supportive yahoo group where others can share their suggestions and support.

Client Served

Rating: 5

I am a DES Daughter and the new Community Manager for DES Action, USA. DES Action provides vetted articles on ongoing research and research results for the DES exposed population. This is so vital as DES exposure requires a lifetime watch, and has effected 3 generations: the mothers who took it, the children exposed during fetal development, and now the grandchildren. DES Action provides education, emotional support and resources like doctors' lists or examination protocol that is vitally important for the DES exposed. Without DES Action, USA the DES exposed population would be blindly looking for answers. DES Action advocates and brings awareness to the DES exposed and the general population, including the medical community. It also provides a an online community for support and discussion. Without DES Action, I would not be able to navigate my medical care with my doctors who are often not aware of the latest findings or recommendations. Last, DES was the first transplacental carcinogen and endocrine disruptor created by man. It is a model for all other endocrine disruptors that are being studied.

Board Member

Rating: 4

I am a DES daughter and former board member of this non-profit. With the support and help of this non-profit I have been able to stay informed on medical research and knowledge on the impact and effects of DES for my entire family. This organization does a lot to provide resources like questions and surveys to use when interviewing new physicians, they provide updates on latest research findings and support groups for multi- generational individuals impacted by this drug. They provide educational articles and resources on the drug and its uses as well as its impact. It is a small non-profit that would benefit from the visibility of Great Non-Profits to help continue their work.

Previous Stories

Board Member

Rating: 5

I originally found this organization while looking to educate myself on the affects of DES. Over the last three years I have found tremendous comfort, compassion and valuable resources through this organization. The members provide a great community of support. The amount of information provided by the organization is tremendous and the networking opportunities are fantastic. I am honored to be an active member of this organization andbe able to be a part of such a strong educational and advocacy for those affected by such a tremendous medical tragedy. As a DES daughter and a cancer survivor I find this organization as a life line.

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.

1 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.

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.