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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

122 Stories from Volunteers, Donors & Supporters

4

Professional with expertise in this field

Rating: 5

This group has worked tirelessly for over 30 years to identify the side effects and long term effects of the drug millions of mothers were given to prevent miscarriage. I applaud their continued efforts to address the problems this nefarious drug is causing for 2nd and 3rd generation progeny of those unfortunate women.

2

Donor

Rating: 5

DES Action USA has been there over the years for all the women and their families who have been effected by DES. In a world where it is hard to find new information about DES, let alone personal information about our own health, DES Action's VOICE newsletter has been a lifeline. They are consistent year in and year in keeping us up to date, and I am loving their new membership section of their website. Thanks DES Action!

4

Volunteer

Rating: 5

Did your mother take the drug DES while she was pregnant? If you're a DES Mother, daughter, son or grandchild, then you'll want to join this thriving online community. DES Action posts news and updates on current research all focused on the lasting effects of DES.

3

General Member of the Public

Rating: 5

DES Action has been a great resource for those of us dealing with the fallout of big pharma pushing DES to our parents and grandparents. They do a great job with the newsletter -- the articles are timely and well-researched. And the website improvements have made staying informed even easier. Thanks for connecting and educating all of us, and thanks for all you do!

Review from Guidestar

1 Marcia31

Volunteer

Rating: 1

I am a DES son. Here are the benefits listed on the website of being a member:

BENEFITS OF MEMBERSHIP

DES ACTION VOICE NEWSLETTER
VOICEbanner[1]
The DES Action VOICE newsletter keeps members current on the latest research and provides reviews of pertinent books and articles. This respected publication, which goes out four times a year, is a “must read” for those wishing to stay informed about DES issues, including clinical, research and legal matters.

DES DAUGHTER ONLINE SUPPORT GROUP LISTSERV
This is a popular Member Benefit specifically for DES Daughters. The group connects them via email messages on a safe, secure and private system. We share ideas, suggestions and support regarding the very personal matters that come up for DES Daughters.
There is something wonderful knowing others are dealing with the same issues and concerns. We learn from each other. To join this listserv, first join DES Action USA.

DES DAUGHTER TOOLKIT
Here is an invaluable resource to help empower DES Daughters to better communicate with their doctors and advocate for the health care they need.
Too many doctors either don’t know about DES exposure or have failed to keep up with the latest research. The DES Daughter TOOLKIT provides important DES information in a user-friendly format for doctors. It’s all available here on this website, but by combining it in one document the messages about increased medical risks and proper screenings are readily conveyed.
It empowers DES Daughters. Hand the TOOLKIT to your health care provider and it does the explaining about DES for you!

ADVOCATE FOR CONTINUED DES RESEARCH
You can’t do it by yourself – but together we can. Without DES Action’s push for research and advocacy for continued funding, it would not have happened.
DES Action stays in touch with scientists about their DES studies and keeps them aware of health issues being experienced by those of us who were exposed to DES.

SUPPORT DES ACTION
By doing so you join thousands of individuals who recognize the importance of having a powerful voice for the DES community. In return, you stay informed and feel good about supporting an important cause.
No one else will do it for us.


This group claims to be an advocate for those exposed but cannot list one benefit of membership for DES sons. When I sent them a letter in 2002 asking them to refer me to a doctor they replied that there are none capable of treating me. When I sent them an email in 2012 with the same request I got the same answer. In other words they have done absolutely nothing for DES sons in the past ten years...


3 Joan55

Client Served

Rating: 5

I am a 56 year old DES Daughter and have been a member of DES Action USA for many years.
DES Action is one of the truly "best of the best" non-profits whose value simply cannot be measured. Always a source of timely and accurate information, it provides a "go to" resource on issues and concerns that are unique to those of us whose lives have been irreparably affected. I am extremely grateful to this organization for all the good it has and continues to do on our behalf...

Executive Director Frances Howell and her staff -- as well as those who founded the organization many years ago -- deserve sincere and continued thanks, kudos, and recognition for all they tirelessly do on our behalf. I am forever humbled and grateful for your existence.

2

Client Served

Rating: 5

It cannot be overstated how important DES Action is to those of us who have been affected by DES Exposure. The organization is educational and supportive, two of the most important qualities to anyone who has been touched by a medical problem. Moreover, I find that the organization strives to improve and keep up with the latest information and issues, while always keeping the personal touch. We are blessed to have DES Action.

2 Pam B

Client Served

Rating: 5

I am a 59 year old DES daughter who has followed DES Action USA from the beginning. I was first informed of my exposure in 1971 at age 15 by my mother. DES Action has empowered us both to seek out the best medical care that we can find. We have both shared information published by DES Action with our doctors, including gynecologists, primary care physicians, dermatologists and dentists.

This organization is near and dear to my heart. Thank you to those who work and volunteer at DES Action to do so much for all of us.Thank you to my DES sisters, and brothers, who share their journey and knowledge with one another. DES Action USA is a clearinghouse of information about DES itself, studies about the long-term effects on us, and other available resources. Most of all, DES Action USA affords us an opportunity to connect with other women, and men, who offer support and caring as we deal with those effects.

pam '55, CA

Previous Stories
1

Client Served

Rating: 5

I have known about DES Action since it first began. I was made aware that I was a DES daughter when the first study came out in the early seventies. I was part of a group that became "examples" of what can happen to a DES daughter when at age 15 I was "on display" at NIH as a classic example of the malformations that can occur in the reproductive system. When I found my self unable to conceive a child after four years of marriage at age 30, DES Action Campaign became an invaluable source of information and resources for referrals. Thank you DES Action. Pamela B.

1

Client Served

Rating: 5

DES Action has educated me and guided my treatment protocol ever since I learned I was exposed in utero to the carcinogen DES. DES was the first synthetic estrogen and was given to my mother in 1958 to prevent miscarriage. She later discovered, to her horror, that this drug did NOT prevent miscarriage. But it DID cause a rare form of cancer in the young daughters of women who had taken it. Since that time, in great part owing to DES Action's untiring efforts and dedication, DES has become a well-known and much studied endocrine disruptor that has a myriad of harmful effects. Not only has their research and support helped countless women (and men) exposed to DES, it has also served as the foundation for much of the modern-day studies into the harmful effects of estrogen-mimicking drugs and other chemicals, such as plastics made with bisphenol A. Please help DES continue their good work!

1

Client Served

Rating: 5

I am a 60 year old DES daughter who relies on the information from DES Action for the most accurate, up to date information about how DES has impacted my life, what to discuss with my doctors, and what to consider when making important decisions about my health. It is the only resource I have found that addresses my concerns, continues to seek the latest research, and shares the stories of a multitude of people affected by DES. I would feel uninformed and isolated without this tremendous organization. I support it's mission, and hope that all DES exposed patients can continue to use this wonderful resource.

1

Volunteer

Rating: 5

I am a 64 year old DES daughter who depends on the information that I receive from DES Action USA. I am forever grateful for the service they provide to us.

Previous Stories
1

Volunteer

Rating: 5

DES is a wonderful organization and I am proud to be a member of it. Since finding out I was a DES daughter back in 1975 I felt very alone and unsure what all this meant to my health. Now I depend on DES Action through its listserve and newsletter to keep my updated and informed on what I need to know and what to do with the information. We are unfortunately all 'time bombs' and none of us really knows what the future holds, but with DES Action I feel that I can keep informed of the latest information. The listserve is an important way to find out what other DES daughters are feeling and what problems they are having that are unique to being a DES daughter. I am very thankful for DES Action.

1

Volunteer

Rating: 5

DES Action has been there for me and other persons exposed to diethylstilbestrol (DES) for decades now since the DES tragedy unfolded in the 1970's. They are the first place I turn for information and support. I have been a member since the first day I found them following a troubling diagnosis. I have served as Volunteer and Board Member. The people at DES Action are the most caring, supportive, hard-working by far of any non-profit for which I have served or been a member. I strongly recommend they be given top honours as a truly GREAT Nonprofit!

Previous Stories
1

Volunteer

Rating: 5

I have known I was a DES daughter since the early 1970's. But it never interrupted my life until the mid 1990's when my pap was "abnormal" and the treatment seemed extreme. So I sought out advice and DES Action was my lifeline to proper care. With their unyielding help and resources I am knowledgeable about my exposure and proactive with my healthcare needs. DES Action continues to provide me support and the knowledge ... and knowledge is power. They are truly generous of time and energy. I know this well as both a longtime member and a volunteer.

1

Client Served

Rating: 5

I am the mother of a DES Daughter who is 48 years old. I have been connected with DES Action USA for many many years, and I truly do not know what I would do without the support I have received from them through the years. In addition, they provided me with literature so I could take it to high school, college, and other places to get the word out about those exposed to DES. This is a 'great' organization who helps numerous people. I have called them on a number of occasions and they have always taken the time to discuss my concerns. I can't praise them enough for the work they do for DES exposed.

1

Client Served

Rating: 5

I'm from Ontario, Canada and became a member of DES Action USA after the Canadian office was forced to close. I don't know what I would do without this wonderful group. Because of this fantastic not-for-profit, I receive up to date info from the DES Action itself, the newsletter The Voice and the List Serv.

I don't feel so isolated because of the support of DES Action USA.

1

Client Served

Rating: 5

I am so very grateful for DES Action USA. I live in Canada and depend on them for updated information through the website and newsletters. I also benefit greatly from their online community to speak with other women also affected by DES exposure. They have been a life line for me since the diagnosis of Breast Cancer back in 2007 and possible links between DES exposure and Breast Cancer. I have concerns for my daughter and how my DES exposure will affect her. I am grateful that there is information provided in that area as well. I feel empowered to know there is an organization there that has my back, it alleviates some stress. I don't know how I would feel dealing with this all by myself. DES Action USA is a real comfort to me in my journey of health.

1

Client Served

Rating: 5

DES Action provided me the information I needed 20+ yrs ago when I too found out I was DES exposed. With their information and guidance, I received referrals for DES medical professionals and attorneys. Because of the info received, I know my 2 ectopic pregnancies, infertility, and t-shapped uterus were caused my my mother taking DES. I continue to read the DES newsletter for up-to-date information . Because of DES Action, it's at least a comfort to know I am not alone as a DES daughter.

1

Client Served

Rating: 5

DES Action is a one-of-a-kind organization. For those of us exposed to DES when our pregnant mothers took it to prevent miscarriage, there is no where else with such comprehensive information about the health effects of our exposure. Drug companies do not want to deal with this issue. Doctors often lack current information. If not for DES Action's information and listserv, I would be ignorant and isolated with my questions. I wish that every nonprofit was as effective as DES Action.

1 Patti Negri

Board Member

Rating: 5

DES Action has been there for me for years. Information, support, advocacy and action! Everything a non profit should be!

Donor

Rating: 5

I have been a member of and supported DES Action for over 20 years because it is THE place to get information about this horrid synthetic hormone. The staff and volunteers are knowledgeable and have developed excellent relationships with researchers looking deeply at the cancers, fertility, and other health concerns that exposed women and men endure. Many physicians remain uninformed about DES; the Action Network provides a unique and invaluable service to them, too.

1

Client Served

Rating: 5

Without the information we have gotten from DES Action, my younger sister and I wouldn't have known how to react to the diagnosis of DES exposure. My younger sister had 2 bouts with cancer and died before her 35th birthday. We were lucky to have had her that long.
Our mother had taken DES to prevent miscarriages since she had 3 of those. She lived a long life and supported our efforts. She was instrumental in getting our records before they were destroyed by the Army. We were lucky to have written proof.
DES Action provides quarterly newsletters along with email blasts. The new toolkit they created will be handy at my next well woman exam. Without their pressing various agencies and the government, we would still be in the dark. New research has shown the long term effects of DES on our bodies. Without DES Action, we would be voiceless and helpless! That is not an overstatement of the facts.
Thanks.!