FAQ’S

 

When were you diagnosed with Breast Cancer?

I was diagnosed with Breast Cancer in January 2015.  I received confirmation in February of 2015 that the type of breast cancer I had was Triple Negative (an aggressive subtype that effects 15% to 20% of the breast cancer population). After completing standard of care treatment, I was re-diagnosed with Stage IV Triple Negative Breast Cancer in 2017. I was given a 4% chance of survival.

What made you become an advocate & consultant?

My story is a unique one filled with the usual ups and downs of managing a cancer diagnosis as a woman of color.  Throughout my journey I was always faced with decisions that involved multiple pieces.  Each individual choice came with a price and I gained more knowledge after every experience.  I spent quite a bit of time becoming educated about late stage cancer, genomic testing, mutations, exclusionary criteria, immunotherapy and disease subsets. Not only did I become an self educated expert in treatment options for my disease but, I did this while facing medical bias from my original oncology team. Through resilience, self advocacy and education (and just twelve weeks after my late stage diagnosis in 2017) I went on to become the very first Triple Negative Breast Cancer patient in the nation to join a very exclusive Phase I clinical trial. Ultimately the treatment worked and saved my life.   I do this for the survivors, those who are in the trenches going thru treatment and family/friends who want to lend a hand or get an understanding of what it's like to manage a cancer diagnosis. Just as important, helping clients in bio tech, big pharma and advocacy groups understand the value of the patient voice and perspective when building out products and services for the communities they serve. Lastly the sharing of information just makes me happy, and if I've opened someone's eyes to the options that are available, then I've done my job.

What has your client roster looked like & what was your role?

  • Blue Note Therapeutics - Patient Advisor (testing new products, patient engagement blog, moderating webinars)

  • Foundation Medicine - Founding Member - Patient Community Council (testing new products, patient engagement, marketing strategy, hackathon’s, awareness and inclusion campaigns)

  • Novartis - Patient Consultant - Steering Committee - (lending patient perspective to address barriers that keep patients from minority and underserved communities from participating in clinical trials)

Have you been involved in other large or small advocacy campaign’s?

Yes, outside of my consultancy work, I have added value and awareness to several key advocacy initiatives:

What has been the impact of your role as a patient advocate and consultant in the community?

  • Raise awareness - the importance of self advocacy and the role it plays in a patients treatment narrative.

  • Partner with major advocates, non profits, bio tech and big pharma to address the issue of health equity, inclusion and disparities in communities of color. One of my biggest joys has been addressing doctors and health care executives to discuss finding creative solutions in outreach, engagement and messaging in regards to treatment options and products and how they can employ critical inclusion practices. Making communities of color more aware, educated and able to confidently collaborate with their healthcare providers to make informed decisions is the only way true health equity can be achieved.

  • Directly impacted raising the credibility, profile and value of NYU Perlmutter Cancer Center, among the cancer community locally and nationally through my exposure in major media outlets including Essence, People and Health magazines, an appearance on the Today Show, as well as other advocacy work within the non profit ecosystem.

  • Founded (with my Co-Founder - Nava Friedman) a non profit -Karen’s Club - that directly impacts patients and caregivers of color by providing education, information and support around clinical trials.

Why the name, SweetLenox?

Just a little play off of my "sweet" disposition and my love for my favorite street in Harlem NYC (my home), the legendary Lenox Avenue!

 

 

What will the site contain?

Lots of good stuff.  You see I was determined not to let my Breast Cancer diagnosis rule my life (it did, but I went kicking, dancing, drinking, laughing, riding, eating, crying and raging my way thru it).  I'll provide interviews with doctors, nutritionist, bra fitters, lawyers, makeup artists, dentists, hair dressers, chefs, comedians, health care navigators (it's a very expensive undertaking) personal trainers, family and friends.  You've heard the line "It takes a village"?  Well it takes a team!