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2020 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

156 Stories from Volunteers, Donors & Supporters

derries12345

General Member of the Public

Rating: 5

DESAction has been a consistent and unbiased source of information. There is no other organization that I know of which validates the DES experience.

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1

General Member of the Public

Rating: 5

DES Action has been the most consistent voice in informing DES daughters and sons about issues related to DES exposure. As a DES daughter, I rely on on this organization.

Client Served

Rating: 5

I learned of my DES exposure in 1972. Since it’s inception DES action has been there for me. Continually keeping me informed with guidelines and updated screening tools I can take to my doctors. Over the decades I’ve relied on them, I truly don’t know how I could have lived this journey without their support, advocacy and new information as it came to light.

In fact DES action and their newsletter saved my life a few years ago. The Voice had an article stating that even if a DES Daughter had a hysterectomy that she should continue to have Pap testing as the risk of vaginal cancer does NOT diminish. I had been told I didn’t need pap testing. With great trepidation I took the newsletter to a local gynecological doctor. He found several localized lesions that were cancer. My cancer is managed with vigilance, testing, surgeries as indicated. I have no doubt that if I hadn’t gone upon receiving the Voice newsletter that cancer would have spread.

Client Served

Rating: 5

DES is one of the most important non profits. It began so long ago, about 70 years ago and still has major repercussions to the mothers, daughters, sons and grand daughters/grandsons today.
I found that so many GYN/OB physicians, and General doctors know nothing about it. The horrible effects besides breast, prostate cancer, infertility and other problems are showing up today. Yet, blood and bone tests never list it as a possibility. I will email my own, my mother’s and daughters horrendous story and also mention about what happened to my other relatives.
I was fortunate in one way because of Des coalition. I found out because of them about the vanguard in laser surgery, research and educator, Dr. John Marlowe. I had to fly to Washington DC over 35 years ago to seek help from him.
More and more research is needed today than ever before. It is a sad state that I had to explain to so many doctors, nurses, gyn’s and other health professionals about DES. The DES non profit must continue.

Donor

Rating: 5

This all-volunteer group educates men and women about the ongoing effects of the drug DES given to pregnant women from 1940-1970, primarily. It turned out that the drug had no positive effect for the mothers but increased the incidence of a rare cancer in their daughters. As these women grew older, other adverse effects (such as infertility and miscarriage) were noticed and continue to be reported, even as some of them reach 80 years old. Some of the daughters' sons and daughters have also had adverse effects.
I am a DES daughter and have experienced some relatively mild effects. I had been aware since 1970 that it was important for me to have special test during my annual gynecological exam, but guidelines from medical organizations, the government and insurance companies change so several years ago I did an internet search to see what the current guidelines were.
That is how I found DES Action USA. Their online materials not only gave me easy to understand information for my annual exam, but also about current research, newly discovered concerns that could affect me and my children, and the experiences of other women. Finding DES Action woke me up to this issue as a part of my life about which I needed to be more informed and involved, with the support of a group of admirable women.

1

Client Served

Rating: 5

DES Action is basically the one reliable and comprehensive source for relevant information and other resources for DES mothers, daughters, sons and third generation. It's also a place to share experiences and find support in the DES affected community. As we learn more about the long term effects of exposure it is vital that this organization can continue to serve us.

1

Volunteer

Rating: 5

DES Action USA has been a part of my life for over 40 years, almost as long as I have known that I was prenatally exposed to diethylstilbestrol. This organization has been at the forefront of finding and sharing important health information to and for the millions of individuals affected by this drug. DES Action continues to be tireless in advocating for research and communication about the health of the generations exposed to DES.

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Donor

Rating: 5

DES Action USA provides the most complete information about the adverse health effects of prenatal and generational exposure to diethylstilbestrol (DES). I have counted on DES Action for almost 40 years as the most reliable source of health information for me, my brother and my nieces.

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1

General Member of the Public

Rating: 5

Hi. I am a DES daughter and have been a member of DES Action for many years. Believe it or not, My gynecologist told me about it years ago. I look forward to the newsletter as it alerts me to so many issues that we need to be made aware of. Unfortunately, many doctors are still not aware. Maybe 15 years ago I had an appointment with my family doctor. I was also having a female issue so decided to have him do an exam (something I would only have had my gynecologist normally do but thought I would save some time since I was already going to be at the family doctors office.) The family doctor scared me.
After looking inside, he quickly stopped the exam and while washing his hands said in all seriousness and a sense of urgency that I needed to get in to see my regular gynecologist right away as something was going on inside of me that wasn't right. I saw my regular gynecologist the next morning. He calmly said after his exam that I was fine that the family doctor just wasn't familiar with DES tissue!!! I was saddened for me when that gynecologist retired.

A few years back I was referred to an oncologist/gynecologist . Before I actually saw her, I handed the nurse the paper (from DES Action) on the proper way to perform an exam on a DES exposed daughter. She sincerely thanked me for the information sheet. I never would've known about all of this if it wasn't for DES Action. I would've just assumed all doctors who know what to do.
To sum this up, the information dispensed by the DES Action group gives me peace of mind knowing I have the latest information on DES exposure.

1

Client Served

Rating: 5

My mother was prescribed DES when she was pregnant with me and little did she know what the fallout would be - miscarriages, ectopic pregnancies, hormonal imbalances and premature birth resulting in brain injury for the one successful pregnancy. DES Action has gathered all available information and made it available to women & men affected by DES exposure. They've pushed for research and getting the information out to the medical community. I have seen the difference in my own doctors' visits over the years as they have gone from completely unaware of DES effects to educated and active in monitoring them. I am very grateful for the tireless advocacy of this wonderful organization. It provides a service not found anywhere else to stay current on these issues.

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1

Client Served

Rating: 5

The news broke about the risk of a rare vaginal cancer for women exposed in the womb to DES when I was 19 - supposedly the peak age of risk. My normally peaceful mother was very upset when she called me at college to tell me. My mother's doctor had told her drugs wouldn't cross the placental barrier during her pregnancy with me. Now we know better - and that is due in part to the endless pushing and refusing to shut up and go away by DES Action. And they have never stopped pushing for testing and studies and legislation to get everyone the help they need. The effects of my exposure have been difficult but it would be harder if I didn't know why I had these problems. DES Action has been a lifeline of support and information.

1 Carol Shayman S.

General Member of the Public

Rating: 5

The information that is available , to those of us, is invaluable. DES gives us the opportunity to share any health experiences, situations, medical resources and much more. It is a place for those of us that have been affected by the medication prescribed to our mothers more than 70 years ago, to reach out to. It has become a community watching out for one another, knowing that we are not alone.

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1

Donor

Rating: 5

The DES community has been a part of my life for over 20 years. The list serve is a great source of information, both from the professionals and the DES community. Just knowing that you are not alone is a huge help. You know that you can always post a question or comment and that there are others out there to help, guide, and share their experiences. The DES Newsletter has gone with me to many doctors appointments, for me to share and educate them to the challenging health issues that many of us experience.
Carol Simon
1950 in New York City

1

Client Served

Rating: 5

I am so grateful that I came across DES Action USA website a year and a half ago. It has provided me with invaluable information and education, with so many who work tirelessly to help and support those who have been affected by DES exposure. Education is so important because many (even medical professionals) do not understand DES exposure and the effects it had on those exposed, they do not understand the journey. DES Action provides a place to communicate, bringing us together in a supportive community with others who understand and are happy to offer loving support. It is so comforting to be able to share with those who truly understand the journey.

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2

Client Served

Rating: 5

When I was 19, it was confirmed that I was a DES Daughter. At the time the MD explained that I needed to let any Gyn I saw know of my confirmed exposure so that they could follow my pregnancies closely and that due to the cervical changes I had that I would very likely have difficult pregnancies. That was all the information I received. I spent the next 22 years struggling with difficult pregnancies, premature deliveries, miscarriages, multiple gynecologic complications which caused me years of pain. After suffering for so many years I finally agreed to a total hysterectomy, hoping for an end to pain and struggles. 17 years later as issues began to surface again, I fell unto the DES Action website. I am so grateful that I found this site. The wealth of information has not only provided me with knowledge and awareness of the role my exposure had in my life, a realization of my continued need for screenings despite being told I no longer needed them, tools to help me be my own advocate, but also valuable information that is needed for medical providers so correct care is provided. I'm so grateful for this site and to those who selflessly work in our behalf. Lydia

1 Isabel A.

Client Served

Rating: 5

DES Action is the only place to go for complete and completely accurate information about DES. DES is still affecting women whose mothers or grandmothers took it. So many DES daughters and sons have health problems today. DES Action is the place to get information, share issues, get help from other people, and build a community.

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1

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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1

Donor

Rating: 5

This is my go to source for trusted information and for shared experience with others affected by DES. I check in daily and am very grateful for their existence. The newsletter is great and the doctor referral service is very helpful. The guide to bring to gynecologists is very important and the advocacy work they do is critical to keep the ongoing effects of this horrific drug in the public eye. Too many young doctors have never even heard of DES. I have been a member of this group since it began and will continue to support them year after year.

1

General Member of the Public

Rating: 5

To have this site to inform DES Daughters, etc. has been a life-saver (literally) for me. My mom took the drug in 1950 and I have had problems associated with that starting at age 22 and ongoing. I can keep up with up-to-date data on DES, protocols to follow for exams, etc. A big thank you to all involved.

1 bonsmca

Client Served

Rating: 5

DES Action is always there as things change for those affected by DES. As we age, daughters are experiencing new health issues, sons are finding new connections, and grandchildren are beginning their own journey with DES. It is great to have a place to go for the latest information, and to get support from others who know what you are experiencing.

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1

Client Served

Rating: 5

DES Action listserv is a lifeline for all affected by the DES tragedy. A great resource for the latest information, support from others who have experienced the same health issues, and a soundboard for what is still in store for victims. Thanks DES Action!

1 Britt V.

Board Member

Rating: 5

I started serving as the Community Manager in May 2020. I'm a DES granddaughter and knew a bit about DES and the org, but now working for DES Action, I am so impressed with the support, education, and advocacy it provides for DES-exposed people and the medical community.

1 Lauren L.2

General Member of the Public

Rating: 5

DES Action is such an amazingly positive, driven group. I cannot recommend these thoughtful leaders enough.

1

Donor

Rating: 5

I rely on DES Action for straight forward and reliable information on the impact of diethylstilbestrol. I have found a caring and knowledgeable community there. My donations are put to good use.

1

Board Member

Rating: 5

I joined DES Action in the late 1980s. From DES Action I found out about my risks from DES, I learned what to do about it, and most of all I felt better knowing I wasn't alone. Just receiving the quarterly newsletter ensured that I would learn of new discoveries about DES and its effects.
A few years ago I became the executive director and my team and I are proud to carry on the important work of those before me.

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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 Diana Brawn M.

General Member of the Public

Rating: 5

DES Action has helped me feel supported in dealing with an issue I've had on my mind since my early teens. It's scary to think we DES daughters have what seems to me like a ticking time bomb (higher cervical cancer risks as well as many other health risks we are still finding out about). We NEED the support of others who share similar issues to help us cope in a healthy way.

1

Client Served

Rating: 5

DES Action has helped me in more ways than there’s space here to mention. For years I lived in the dark, lacking accurate information and not understanding problems I had had for a long time.

1

General Member of the Public

Rating: 5

DES Action USA has been a lifesaver. The organization provides reliable information that is relevant to the challenges DES exposed people face throughout their lives, and the members provide unending support. It's what we need in a nonprofit and is fully deserving of the highest rating.

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Client Served

Rating: 5

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

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1

Client Served

Rating: 5

DES Action was a lifeline for me when I first discovered my DES exposure as a young adult, and since that time it has provided information and support through the many stages of my life that have been affected by my DES exposure. It continues to be an excellent source of medical and legal information for me and my children. In addition, through the list-serve it supports, DES Action provides access to a community of other DES-exposed individuals who can share their questions, concerns, and support for each other. Bravo DES Action!

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1

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.

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1

Client Served

Rating: 5

DES Action is an invaluable resource and fantastic support system for those dealing with a DES exposure. Their website is very comprehensive and helps with anything from finding a doctor to doing a medical records search. Plus their Voice newsletter is great! I have lived long enough to remember the days when most medical professionals didn't even know what DES was. But because of the tireless efforts of DES Action, from education to advocacy, this is no longer the case. And for being a smaller not for profit, it is impressive to see their ongoing commitment to the important research studies that are currently in the works. I am eternally grateful for all the help that I have received from DES Action.

1

Donor

Rating: 5

DES Action USA has by far exceeded what I would expect from a non-prof agency. Being a DES Daughter with many complications over the years I have found invaluable support and up to date information from fellow DES Sisters and the leaders and support staff at DES Action. Consider me a life-long member moving forward as I will continue to support this 5-Star agency. LWilson

1

Client Served

Rating: 5

I recently was diagnosed with CCA due to DES exposure. Not knowing what any of this meant, I did some research and was able to connect with the DES DAUGHTERS and started communicating. The whole organization has been nothing but extremely supportive during my pre surgery all the way through the post op period. They have all been there for me. I receive numerous phone calls and emails from the individuals in the organization just wondering how I am doing and praying for me. They are all wonderful. I really feel like if I had to go through this ordeal, it would not have been as bearable without all my new friends that were there for me. It is a wonderful organization and we all share our stories with each other. They have been great.

1

Donor

Rating: 5

It's a place where, for the first time, I could tell my story about DES and its effect on me.

1

Donor

Rating: 5


I am a 63 year old DES son and a brother to a 64 year old DES son. Both of us have experienced the effects of DES. My mother had the foresight to tell me about DES back in 1983 after reading new information about the affects of DES. Except for an aging dentist, not a single doctor I’ve gone to had any knowledge of the long term affects of DES. I’ve been reading DES Action now for years. The researched and validated information is a valuable asset for myself and should be required reading for all physicians.

DES Action has a Men's Group in which male victims of DES can confidentially present, discuss, and learn about how DES has affected them and other men.

1

Volunteer

Rating: 5

I am a confirmed DES son, experiencing the effects of DES for almost 60 years. I have found that physicians in general, including endocrinologists, do not know about DES or the effects on all living things from the endocrine disrupting chemicals that we are exposed to every day. DES Action has, for over 40 years, provided well researched, validated information from all over the world that benefits physicians, DES victims, and the general public.

DES Action now has a Men's Group in which male victims of DES can confidentially present, discuss, and learn about how DES has affected them and other men.

DES Action, U.S.A. is a very valuable organization.

2

Donor

Rating: 5

I found out that I was DES exposed when I was in college. I have been a member of DES Action, pretty much since it was founded. It has been a place I could turn for trusted information, the latest studies and recommendations and the kinship of others who have been affected by this horrible drug. They have not only provided valuable information for me, but also for my health care providers, some of whom would have been otherwise fairly ignorant about DES and its effects.

3 Karen452

Advisor

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, including the 3rd generation(grandchildren of the original mothers who were prescribed DES). 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!

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2

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!

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1 kathleenbethel

Client Served

Rating: 5

Like others, mom was given DES in 1955 to stop a miscarriage. I was born with multiple birth defects particularly to my urinary tract and reproductive system. That was only discovered when I was six and continuous high fevers (later discovered to be from infections) sent me into convulsions. By then one kidney was totally destroyed.
Years of corrective surgeries followed, including some where my heart stopped. Then wheelchairs and missed years of school to recover from scar tissue removal.
I was told I’d never get pregnant. So I never thought about it when I married. But at age 33 I found out I was when I was already 5 months along!
The doctor warned she might suffer the next generation effects of DES as well. She didn’t - but my second daughter did.
Luckily, because so much research had been done, she was put on antibiotics prophylactics for her first four years to prevent massive infections while her urinary track corrected.
I’ve had so many other health issues - heart problems, autoimmune issues, scoliosis, that no one else in my family had, I’ve always wondered if any were related.
My whole life was changed because of DES. I am still disgusted no one has had to atone and be held accountable.
So glad I found this group last year.

1

Client Served

Rating: 4

I learned in high school thAt my mother had taken DES when she was pregnant with me... probably because she had two miscarriages before I took. My cervix was misshapened, But that’s the most of my results....
This nonprofit is wonderful... it’s great to have a place to go, to be a part of. I really appreciate it!!

1

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.

1

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!

1

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

1 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.

1

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!

1 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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1

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.

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2

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!

1

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.

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3

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

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

1 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.

1

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.

1 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.

1

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!

1 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.

1

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.

1

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
1

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.

1

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 .

1

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

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.

1

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.

1

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.

2

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 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.

2

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.

2

Donor

Rating: 5

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

5

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.

4

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.

4

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.

4 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.

3

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

4

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.