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2018 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.

Community Stories

119 Stories from Volunteers, Donors & Supporters

Client Served

Rating: 5

DES Action offers critical services for women affected by DES. From information to peer support to activism, DES Action protects and empowers women and has done so for decades.

Client Served

Rating: 5

I have been a DES Action member for many years. This organization is indispensable for the DES-exposed, providing up to date medical information, doctor lists and support. So glad they exist!

Client Served

Rating: 5

I have been a member of DES action for years. It is a wonderful support group with numerous resources available for those affected by DES

Client Served

Rating: 5

DES Action has always been there when I needed support, from the time I found out I was DES-exposed, through cancer fears, pregnancy challenges, and premature deliveries, to the present, by keeping us informed of continuing impacts on multiple exposed generations and continuously calling for more research.

Previous Stories
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Board Member

Rating: 5

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.

Client Served

Rating: 5

Excellent, helpful and there when you need them whether for big or small things.

Previous Stories
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Client Served

Rating: 5

This organization provides much needed information and support to DES daughters all over. I don't know what I would do without it and it's members.

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Isabel A.

Client Served

Rating: 5


DES Action has, over the years, furnished accurate information and compassionate assistance to all DES survivors and allies. Now it continues to do so for the third generation and beyond.

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Volunteer

Rating: 5

DES Action tells the truth and the whole truth. Most other sources of information continue to give misinformation, such as implying that DES has ever prevented a miscarriage. DES Action is a strong and unique source of support for people who are DES affected, for the people who love DES sons and daughters, and for the medical practitioners who treat DES sons and daughters.

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Carolyn R.2

General Member of the Public

Rating: 5

DES Action is very helpful in providing vital health information, as well as much-needed support. Since many people are unaware that they were exposed, it’s crucial to provide this knowledge.
I’ve learned so much about troubling health problems that I had no idea were connected to my exposure. And it gives me hope for the detection of problems in my children.

Client Served

Rating: 5

I have enjoyed and benefited from a long-standing membership with DES Action USA. They have helped me whenever I have called with questions and they certainly helped me accept the fact that 2 of my 4 children are homosexual. I believe this is a direct result of my DES exposure when my mother was pregnant with me. Thank you DES Action USA!

Suzanne43

Board Member

Rating: 5

I became a member of DES Action in the late 1980s. Being a DES daughter is not something I like to think about often. I don't have any active health issues. But getting the newsletter every quarter is worth the cost of membership. I just read it through and I know I'm up to date on all I need to know about DES.

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Client Served

Rating: 5

I've been a member of DES Action since my early 20s, quite a while ago :) their newsletter has updated me on research and, sadly, new discoveries of the harms that DES caused. It has given me friends and supporters. I look forward to being a member for decade more!

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Karen452

Professional with expertise in this field

Rating: 5

DES Action is the only non-profit that "identifies, educates, advocates for and empowers the DES exposed population. Their benefits are many:
Searchable Doctor Listings — DES aware doctors in your area.
Monthly eMail Alert — News and updates every month in your eMail box.
Quarterly VOICE Newsletter — The VOICE documents the history, the science, the new research, and the personal stories of DES.
Attorney List — A list of knowledgeable attorneys DES Action members have shared.
Exclusive Content — Expanding collection of articles and videos accessible only to current DES Action members behind our members tab of the website.
*New! Stupid Cancer App — Offers online opportunity to seek support or provide mentorship to other DES exposed, with or without a cancer diagnosis. Allows you to choose who you communicate with. Currently available for IPhone, and Android app.
*New! Library of Facebook Live Events — During our 40th anniversary year, and going forward, go to our DES Facebook page to “attend” talks by authors, researchers, and advocates of interest to the DES community. Ask questions, get answers live! Can’t attend…no problem, view the videos available to members on DES Action website after the event!
DES Action USA on Facebook* —“Like” DES Action USA on Facebook and follow us on Twitter to stay up to date on medical and environmental health news that affects you, your loved ones and the planet.
Online Support Group for DES Daughters — A safe private community of DES Daughters where you can compare notes, share doctors’ advice, and resources, and gain knowledge on issues that affect DES Daughters during different phases of life via our email listserv.
Toll free number — (800) 337-9288

DES exposure is a lifetime watch, and research is ongoing on how it impacts DES exposed. You won't find information in the news, so this organization is the watchdog, and has contacts with the researchers, and can advocate for you, and help you get what you need from your doctors. I can't say enough about them. It is because of them and their work that DES exposure and the millions who were medically and emotionally impacted are still getting the attention they need!

Previous Stories
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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

I know several people who work for this wonderful organization. What they do for those impacted by DES is amazing. They create a real sense of community for them, answer calls and hold events such as frequent Facebook live broadcasts with interesting and informative speakers. They do so much with a tiny staff and tiny budget and are to be applauded for their efforts.

Previous Stories
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.

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.