Spotlight On: Andrea Downing and Valencia Robinson of The Light Collective

Sep 8, 2022 | Real Health Stories

How A Breast Cancer Previvor and Breast Cancer Survivor Are Creating Safe Health Spaces for Women

Women’s Digital Health had the opportunity to connect with Andrea Downing and Valencia Robinson, Co-Founders of The Light Collective, a nonprofit on a mission to help peer support groups foster healthy human connections on the internet. Andrea Downing is a “previvor” of the BRCA1 mutation who received her diagnosis at age 25. She had prophylactic bilateral mastectomy in lieu of her high risk of Breast Cancer. Her career in technology has helped her continue to advocate and further privacy protection for the Breast Cancer community.

Valencia is a Triple Negative Breast Cancer survivor who received her diagnosis when she was 33 years old. While raising four small children and continuing to work as an English teacher, she had a bilateral mastectomy and chemotherapy. She has served on the board of Florida Breast Cancer Foundation and worked with numerous organizations including National Breast Cancer Coalition that have impacted the lives of many. In addition to serving on the Board at the Light Collective, Valencia launched the Women of Color Wellness Alliance, a non-profit that offers support for women of color with breast cancer, heart disease, stroke, and diabetes,.

Andrea and Valencia candidly share about their health journeys and how confronting Breast Cancer altered the trajectories of their lives while creating an opportunity for them to help others. Through their advocacy efforts, they have created safe spaces where women can share their experiences and receive the support they need as they navigate their changing health needs.

 

Check out their site and toolkit at Light Collective which advocates for data rights for online patient communities

https://lightcollective.org/mission/

Follow Valencia and her work at

https://www.instagram.com/valencia1340/ https://womenofcolorwellnessalliance….

Follow Andrea and her work at

https://twitter.com/bravebosom

#Belikelight

https://andreadowning.substack.com/about

 

0:00 – Introductions

1:52 – Andrea & Valencia share their experiences learning about their health & how breast cancer has impacted their families

8:19 – Andrea highlights discrepancies in breast cancer screenings for how women of color

12:45 – Andrea & Valencia discusses their first personal encounters with genetic testing & breast cancer

19:21 – Valencia discusses we can better educate women on how to do self-screenings & understand changes in their health

22:42 – Andrea & Valencia talk about the emotional impact of their diagnoses, the challenge of navigating the healthcare system, & the importance of personal advocacy & finding support

29:24 – Andrea & Valencia talk about how & why they started online communities; Valencia also talks about how yoga helped her rebuild her body & strength

37:40 – Andrea talks how the Cambridge Analytica/Facebook data breach sparked her data privacy advocacy journey & inspired then to start The Light Collective

46:28 – Andrea explains how your online information can impact the people around you; why you should care about your data being safely handled

49:06 – Andrea & Valencia share advice on selecting an online support community & how to protect your personal information

54:00 – Wrap up & share contact information

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Author

  • Brandi Sinkfield

    Dr. Brandi, is a Board-Certified Anesthesiologist, who was inspired by her mother, a registered nurse who graduated with a degree in information technology. Through tough love and support from her father, extended family, and friends she attended Case Western Medical School and received her M.D. She completed residency training at Cleveland Clinic and dual fellowship training at Stanford Anesthesiology in Perioperative Management and Digital Health. Growing up she experienced the lack of transparency, shame and secrecy surrounding women’s health and body confidence driving her to imagine a pathway for her own daughter and other women to access information that empowers them and inspires confidence.