In this week's insightful, double-interview Everviolet Chats, we meet Carolyn Jenkins, Co-Founder & CEO, and Shea Mencel, Co-Founder & Senior Director of Community Engagement, at We Are Here, a unique cancer support platform. Both breast cancer thrivers themselves, Carolyn's diagnosis and subsequent journey inspired her to seek ways to improve the cancer experience for others, while Shea's own battles fueled her passion for creating a supportive environment. Together, they've launched a comprehensive destination for patients to receive personalized connections for exactly what they need, when they need it.
Learn more as we dive into We Are Here's innovative approach, its for-profit model associated with Livestrong and Design Run Group (DWG) and how it is clearly differentiated from other platforms. Carolyn and Shea discuss success stories, their tech-driven vision for enhancing cancer support and We Are Here's commitment to diversity, privacy and expertise, while offering valuable resources to those navigating cancer treatment and survival.
Can you tell us a little bit about your personal experience with breast cancer and how it led you to We Are Here?
Carolyn: In 2018, I was so excited to be hired as the CEO of Khorus software. Only 60 days later, I was diagnosed with breast cancer. When I was handed a thick, fairly generic notebook, I could not help but think technology could improve upon the notebook experience. I had similar thoughts as I progressed through decisions and research. The real clincher for me came a few days before my bilateral mastectomy. A nurse explained that I would need to put my four post surgical drains on safety pins, drape the pins on a wire coat hanger, and have my husband place the hanger on the shower head for me. That simple explanation assumed so much - that I had a husband, that I was ok waiting for help to shower for 6 - 8 weeks, and most of all, that I would be immediately comfortable revealing my raw scars and drains with others. It took me two hours of searching to find a $12 shower belt that gave me independence and dignity. I knew then that I would one day work to make the journey easier for others.
Fortunately, we caught my cancer early. However, the journey still disrupted every aspect of my life for two years. Even now, I live with mild lymphedema and treatment induced menopause. The journey never ended, it just evolved.
Shea: I am a 2x breast cancer survivor. I was diagnosed with stage II breast cancer at 29 and with an early stage metastatic recurrence at 32, so this is a big passion project for me. I continuously experience the gaps and complexities of cancer care, and I am so proud of what we are building to try to make this experience easier emotionally, physically, and financially. We Are Here is the solution I have been looking for since I was first diagnosed in 2018. I am proud to have made my mess my mission!
We Are Here has a unique approach to cancer support, using a for-profit platform associated with Livestrong and Design Run Group (DWG). Can you explain the thinking behind this model?
Carolyn: There are over 5,400 cancer non-profits and a search for “cancer clothes” on Amazon returns over 20,000 results. Now, add in looking for services like oncology nutritionists, home cleaners offering discounts, etc. Handling the impact cancer has on day-to-day life is overwhelming. As a result, patients, caregivers, and survivors often miss out on impactful resources and connections. We Are Here is changing that. Instead of receiving a notebook or a list of possible resources – expecting people impacted by cancer to have time and energy to wade through everything – We Are Here connects people to exactly what they need when they need it.
Think of us as a hub making great connections. But we are also more than that. We monitor and foster those connections. For example, when a grant application opens up, we gently nudge the appropriate people to apply (or even apply on behalf of them); or when exciting new research comes out, we send it to the relevant members.
Our thesis is that by making these connections, we can reduce financial strain, emotional distress, and fatigue because research shows these are related to outcomes, which in turn leads to lower cost of care.
How does We Are Here differentiate itself from other cancer support platforms, both for-profit and non-profit?
Shea: Prior to joining We Are Here, I spent over a decade in the non-profit sector focused on social impact. This is my first for-profit company, and I am really proud of the innovative ways we are developing to be different as well as supportive of other platforms in the space.
Below are a few ways We Are Here stands out:
- Holistic Approach: We address not only the physical aspects of cancer, but also the emotional, mental, and social well-being of individuals.
- Prioritize Personalization: We understand that each person's cancer journey is unique, so we tailor our support services to meet their specific needs.
- Research and Innovation: We ensure that our members have access to the latest advancements in cancer care, supporting evidence-based decision-making.
- Accessible and Affordable: We will be offering various membership options, in addition to working with non-profit and for-profit organizations, insurers, and healthcare providers, and prioritize the inclusion of those who may face financial barriers.
- Collaboration and Support for Other Cancer Platforms: We Are Here actively collaborates with and supports other cancer platforms. We believe in the power of collective efforts and work together with other organizations to exchange knowledge, resources, and best practices. By fostering collaboration, we aim to strengthen the overall support ecosystem.
Ultimately, We Are Here is the only solution lowering the cost of care and improving outcomes by addressing cancer's impact on everyday life for patients, survivors and caregivers.
Can you share some success stories from users who have benefited from We Are Here's services, and how it has helped them in their cancer journey?
Shea: We are actually still supporting our very first member who signed up with us in 2021, which makes us very proud.
We are constantly expanding our offerings and bridging support gaps. If a service, product, or resource is unavailable on our platform, we actively seek it out. For example, when a member expressed a desire for hair extensions as their hair grew back, we reached out to local salons and successfully negotiated the service for free.
We have a member in her 70s living in Georgia living with metastatic breast cancer and suffering from financial toxicity due to her diagnosis. She was not having success with any grants she applied to. We reminded her there was a grant she could reapply to every single month and we worked with her daughter to help her with the application. She ended up getting $2500 which she put directly to her utilities and rent for several months.
We have another member named Don who came to us incredibly isolated after just losing his wife and being diagnosed with prostate cancer. He did not have a smart phone or email, but we were still able to connect him to several mentors and mentor groups who stepped up to be a guide and support system for him.
We continuously work to move the needle and ensure that our members save time, money, and energy.
How does We Are Here envision using technology to improve cancer support and care in the future?
Carolyn: In the future, I expect that in addition to proving the platform lowers cost of care and improves outcomes, we can also predict what mix of products and services are most likely to improve outcomes for any particular person based on their unique circumstances and help drive coverage of daily life activities.
While we pride ourselves on leveraging technology to connect with our members, we firmly believe in maintaining a personal human touch. Instead of relying solely on AI, we are a team of real people who deeply care about supporting individuals going through cancer. We ensure genuine follow-through and provide compassionate support, with the empathy and understanding that only real human connections can offer. Our commitment is to be there for you every step of the way, with a personalized and human approach.
We Are Here has been recognized for its commitment to diversity and inclusion. How does the company prioritize these values, and what steps have you taken to ensure a diverse and inclusive culture?
Shea: Culture is about our entire community, starting with our team.
Our core team is itself diverse. We have an equal mix of females and males. Our CEO is hispanic and so is our board chairman. We have multiple other ethnicities on our team. Our small team also has members of at least three different faiths. We embrace that our differences make us stronger.
We are also intentional in partnering with organizations to help serve a diverse population. We work with numerous organizations that are specific for people of color and for members of the LGBTIQA+ community.
How does We Are Here ensure privacy and security of user data, and what measures do you take to protect sensitive information?
Carolyn: Privacy starts with our community members. They have complete control over what information is shared with our partners and when.
We are also diligent to ensure every tool that we deploy adheres to the highest security standards. That applies to any code we develop, as well as any off the shelf solutions that we incorporate like our texting and video tools. We have an amazing CTO that keeps security top of mind.
Can you talk more about the team behind We Are Here, and how their expertise and experience has contributed to the success of the company?
Carolyn: Carolyn, the CEO, is a previous SaaS CEO and serial technology entrepreneur. She knows how to build a company. Carolyn’s secret sauce is how she treats people. Her awards reflect that. In previous companies, she was nationally recognized when she was Chief Employee Development Officer and internationally recognized twice when she was Vice President of Customer Success. Carolyn is data driven and can pivot as needed. Carolyn is also a 2x cancer caregiver and a cancer survivor. She has the passion and experience to lead We Are Here to success.
Alex, our Chief Product Officer, has a strong background in human centered design in both general healthcare and cancer care specifically. The multiple rapid prototyping teams he has led built his ability to set an outcome objective, create an inexpensive prototype and track the results before investing in more expensive and time consuming development. This helps us design by first listening to the needs of our members, developing, and then testing the success. Alex is also a 2 time cancer caregiver. He knows first hand the lack of help for cancer caregivers.
Shea is our Sr. Director of Community Engagement. She built social impact programs locally and globally while Deputy Director at Eisenhower Fellowships. When she faced her own cancer battle, she returned to school to become a licensed integrative health coach to educate herself on how to address many of the gaps in her own cancer care. Shea is also secondary trauma certified and peer support trained. Shea excels at ensuring our solution meets our members where they are. Shea is the primary reason we have a 100% satisfaction rating 5 quarters in a row.
In addition to our co-founders, our founding team members also include amazing humans who serve as CTO, Marketing Director, Social Media Expert, CFO, Controller, and Developer. Every single one of them adds so much value. This entire post could be just about how impactful they are.
How do you stay updated on the latest developments and research in the field of cancer treatment and support, and how does We Are Here incorporate these findings into its services?
Shea: In addition to being a patient myself as well as an integrative health coach, I consistently have my pulse on the latest research and any new support offerings. I am a bit of a wellness addict, so being in the know of all things in this space is what I have been laser focused on for years. Now I am able to put that energy into building We Are Here’s vast resource network and ever-evolving platform.
As co-founders, how do you see We Are Here evolving in the next 5-10 years, and what are your long-term goals for the company?
Carolyn: I want We Are Here’s brand to be as well known as Amazon, Yelp, AirBnB, etc, because I want anyone impacted by cancer to have all the support they need.
Shea: My ultimate goal is that We Are Here becomes the standard of care for anyone affected by cancer. I want everyone affected by cancer in the US to know to come to us to get what they need, when they need it.
What advice would you give to someone who is currently going through cancer treatment or is a cancer survivor?
Carolyn: Sign up for We Are Here! :-)
Shea: Ask for help, and allow yourself to accept it. Your mental wellness is just as important as your physical health. It can be scary to raise your hand and admit to needing support, but we are not meant to go through this type of experience alone. Not only will this decrease loneliness and distress, it will be supportive in your healing and outcomes throughout treatment. And sign up for We Are Here. :-)