DES Action USA Community Manager, part time

Job Description

We are seeking an outgoing, compassionate person to be DES Action’s new Community Manager. The ideal candidate will be a great listener, detail-oriented and passionate about the impact of DES on the women given the drug in pregnancy, their children and the grandchildren.

The role of the Community Manager for DES Action is to handle the daily responsibilities of the membership community and educational initiatives or projects. The combination of maintaining member satisfaction and increasing donations are the priorities. The Community Manager is expected to be familiar with all aspects of DES — harms caused by DES, history, ongoing research, general status of ongoing research of DES.

The Community Manager works 20 hours a weeks, benefits but no paid health insurance.

DES Action was founded in 1978 to identify, educate, empower and advocate for those who have been affected by the drug diethylstilbestrol. Please learn more about DES at:

Member Support

This is the primary responsibility for the Community Manager and will be where the majority of your time will be spent.

  • Phone Calls and eMails from members or the interested public. Answer questions and supply information about DES exposure and assist members who might have questions about paying dues or using the member website area.
  • Maintain database to record notes of calls and emails. Run weekly reports on donations and memberships.
  • Personal thank-you notes to high donors
  • Monthly eMail Alerts, designed and sent by Marketing Manager
  • Moderate DES Daughters Discussion and Support Group (add members, check DES Action membership, approve comments)
  • Moderate DES Men’s Discussion and Support Group (work with volunteer leader, add members, check DES Action membership, approve comments)



  • Review and update annual thank you messages
  • Routinely review and improve member online donation experience (automated thank yous, etc)
  • Update annual schedule for donation/renewal/VOICE mailings


  • Draft solicitation letters for quarterly special appeals


  • Assist in analysis of response for each solicitation and renewal mailings, and suggest better ways to raise money
  • Compose Weekly Donation reports-with break out of join/renew/donate and money from Special Appeals letters

Advocacy, Volunteers and Special Projects, as arise

Advocacy: The executive director should passionately believe in the work of DES Action and advocate on the behalf of all those harmed by exposure to DES. In the past the Community Manager and the executive director worked together to appeal to the CDC and USPS Task Force regarding changes in recommended medical screenings that affected DES daughters and granddaughters.

Special Projects: In the past projects have included working with a professor at Mt Holyoke on a research study regarding DES, gender and sexuality. The year before we held symposia on DES at Boston University and at Mt Holyoke. The Community Manager developed the concepts and held a key role in making them happen.

Future projects might include promoting the upcoming-40th anniversary of “Lou Grant Show-Inheritance”(was aired in January 1980) and in 2021 the 50th anniversary of seminal Herbst paper on DES exposure and link with clear cell adenocarcinoma.

Volunteers: Recruit and manage volunteers to share your workload as much as possible. We presently make very little use of volunteers. We do have a volunteer DES Son moderator for the DES Men’s Discussion and Support Group.

Promote DES Action

Reach out, manage and increase relationships with friendly organizations and international DES organizations to collaborate for articles, studies, advice, screenings, and care of the DES population.

Friendly orgs include Mt Holyoke College, Breast Cancer Awareness, Our Bodies, Ourselves, International DES Action organizations, among others.

Website Updating

Communicate with tech vendors when the website is not working properly or needs an update.

After each quarterly issue of the VOICE is produced, review it for any articles or information that should be added to the website. We have a service provider who makes the actual updates on the site under the Community Manager’s direction.

Review the website in full once a year for accuracy and needed updates. (A volunteer or even a volunteer advisory board might be valuable for this project).

VOICE and social media management

VOICE: We have an editor who researches and writes the quarterly VOICE newsletter. The Community Manager supports the editor by suggesting article topics, helps find interviewees for articles, reads studies, reviews articles before publication, etc.

Social Media: The VOICE editor posts on Facebook, the Community Manager responds to Facebook page comments and personal messages.

The DES Action USA Community Manager is a member of the MedShadow executive team representing the DES Action USA membership and educational initiatives.

Please email resumes to