Today we’d like to introduce you to Abby Westerman.
Abby, please share your story with us. How did you get to where you are today?
The story behind b-present begins with my daughter Kirsten’s leukemia diagnosis at the age of 19 and her experience over seven subsequent months in the hospital, which became the inspiration for our organization. Kirsten’s life post-diagnosis was what we learned is a familiar story: in the beginning, she received a flood of visits, calls and texts, but as the weeks wore on, friends slowly faded, neglecting to make time in their busy schedules. We all struggled with what to do and say around Kirsten, which was strange because nothing about her had changed, but we felt like it had. We, members of her support network – became Kirsten’s connection to the outside world. Unfortunately, through overly filtering words and actions, and walking on eggshells to be sensitive to Kirsten’s new needs, many failed to be truly present for her. Through her treatment journey, instead of serving as a lifeline that could be counted on for undying support and presence to help her feel normal again, her support network – or lack thereof at times – became a constant reminder that things were different, and she had cancer. Kirsten was honest and outspoken about this, and held a bold vision for her life post-treatment: she would become an oncology nurse and advocate for young adults needing supporters to be present throughout the treatment journey.
Kirsten’s story ended differently than any of us had hoped or expected. Three weeks after finishing treatment and ringing the bell to signify she was cancer-free, Kirsten began experiencing symptoms that resulted from the harsh therapy, and her body couldn’t sustain itself. She was gone before many had time to say goodbye. As we processed her sudden loss, we all reflected on how we could have been better supporters, more mindful of her situation, and given her a better quality of life over those last seven months. Rather than just hope things would be different for young adult cancer patients to follow, we decided to take Kirsten’s vision for change and make it a reality. In 2017, three of Kirsten’s best friends and supporters joined me in establishing the b-present Foundation, a nonprofit focused on improving the experience of young adults with cancer by amplifying the importance of presence and providing information and tools that empower supporters to be there when it matters most.
We’re always bombarded by how great it is to pursue your passion, etc – but we’ve spoken with enough people to know that it’s not always easy. Overall, would you say things have been easy for you?
If you ask any newly formed nonprofit, I am sure most will tell you the same thing: starting and sustaining a nonprofit is hard work. Things don’t happen overnight, and long hours and persistence from everyone on the team are required to move things forward. I feel fortunate to have engaged an enthusiastic volunteer board of directors and a passionate advisory board comprised of medical professionals, survivors, supporters and top researchers in young adult cancer care. We also have the local community here in San Diego that has provided the necessary support, resources and encouragement to help us get to where we are today.
Our top challenge is navigating the many rules that exist within the healthcare industry. Talking to members of the community we are serving is an important component of creating meaningful solutions, but we have to be mindful of rules put in place to protect patients’ privacy. These rules are important and well-intentioned, but sometimes they can inhibit support during treatment, and they make our work more difficult. Since we are no longer active in the medical system through Kirsten’s treatment, we had to work hard to regain access to the key stakeholders – doctors, nurses, child life specialists, young adult program managers and support group coordinators, other patients, survivors and supporters – that were integral to her treatment journey. Now, through connection with these groups, we’re able to make strides in creating and providing the necessary tools to optimize patient support.
Running b-present as a full-time volunteer has been a new and exciting experience for me. After 33 years as an engineer working for the Navy, I retired at the end of 2018 to devote my full attention to b-present. While many skills acquired during my career, including running large projects and managing groups, are helpful for my new job as CEO of b-present, there are some significant differences in running a nonprofit that has required a bit of hands-on learning. I have been working toward my Nonprofit Management Certificate through the University of San Diego to ensure our organization has the structure it needs to be legally compliant and move forward effectively with purpose.
Our progress has been steadily increasing over time, and we are at a tipping point. 2020 is gearing up to be a truly transformational year for us. We are starting to get recognition outside of our existing community of supporters, which has been really incredible. Our next challenge will be ensuring we have the resources and people to take our programs to the next level, which is a big focus for us in the coming months.
Tell us more about your organization.
The b-present Foundation is a 501(c)3 nonprofit founded in 2017 in memory of 20-year-old Kirsten Westerman, who lost her battle with leukemia in 2016. We are focused on improving the experience of young adults with cancer by providing tools and information that empower their supporters to be present.
Through two key programs, b-aware and b-connected, we are providing resources to enhance the support network from pre-cancer diagnosis through survivorship:
b-aware is focused on educating the general young adult community about the importance of being there for others. We’re proactively providing young adults access to information and experiences that amplify the importance of presence to inspire active change. By giving young adults the tools and experiences before a friend is diagnosed, they will feel empowered to be a strong supporter as soon as the need arises.
b-connected is focused on providing the tools to facilitate strong support for young adult cancer patients post-diagnosis through survivorship. We’re addressing the unique needs of these young adults throughout the treatment journey by working closely with patients, survivors and supporters to enhance the connectedness of social support networks. Our web-based patient and supporter connection tool, b-there, is designed to ensure the support network has the information they need to be there from the day of diagnosis. We are excited to share that this tool was the Astellas C3Prize Emerging Ideas Winner in 2019.
The thing I am most proud of in our organization is the incredible progress we have made in just two years. It has been a team effort, and we are starting to expand beyond our founding supporters. We have a community of passionate medical professionals, young adult survivors and supporters that are energized by the b-present mission and driven to make a difference. Consistently, they are showing that support by generously volunteering their time to help us and our initiatives. In the face of so many challenges across the globe, to empower young adults to be present is a skill that will never expire and can be applied to so many different situations beyond cancer. We are working to turn such a devastating experience into a bright light of hope for others in the future, and this is a legacy we’re all proud of.
We wanted to improve the young adult cancer experience and were very deliberate in our choice to focus on the support network. There are so many aspects of a young adult’s life that are impacted by a cancer diagnosis, but we found that nothing existed that specifically focused on helping improve the quality of support from peers. Ironically, this area is most important to these young adults, and greatly impacts their response to treatment. Young adult cancer patients crave and require a sense of normalcy and count on their supporters to help sustain it. Given the proper tools and information, we have the power to change the quality of support, and this will directly impact patients’ quality of life and health outcomes.
Has luck played a meaningful role in your life and business?
I have had my share of unlucky moments in life and work, but I think we all have. It is what we choose to do with those moments of misfortune that can cause us to grow or stagnate. We can often make the mistake of viewing our difficult experiences as bad luck and asking the unanswerable question, “why?” or worse, “why me?” While this is a natural response, I have learned to ask a more important question: “What can I learn from this, and how can I fix it or do better next time?” The answer to that question will turn that unlucky moment or phase of darkness into light. This may sound strange, but I am grateful for every unlucky experience – maybe not at the moment when I am really struggling, but after I have had a chance to reflect on what happened and why it happened. Bad luck keeps me humble, helps me grow personally and professionally, and without all of my experiences, I would not have the instincts and insights that make me the person I am today.
In the case of good luck, I don’t know that I have ever had an experience where I look at it and say, “wow, I sure got lucky!”. I think we create our own good luck by being open to opportunities and situations and putting in the work to enable what some might perceive as the “lucky” outcome. I also recognize that chance does play some role and that it is important to make the best of those opportunities when they present themselves with gratitude and humility.
I think it is safe to say that cancer is an example of the worst kind of luck. Losing a child can take you down a dark path, asking the defeating questions: Why my child? Why our family? Why did they have to suffer? But, by asking the question, “What did we learn and how can we make this better next time?” we have brought light back into our lives. Kirsten gave us the seeds of inspiration with her experience and vision for change, and we are committed to growing those seeds into solutions that improve future situations. We are dedicated to improving the quality of life for other young adults diagnosed with cancer, and empowering supporters to be present.
- Address: 7875 Highlands Village Place
San Diego, CA 92129
- Website: https://b-present.org/
- Phone: 858.922.5560
- Email: firstname.lastname@example.org
- Instagram: https://www.instagram.com/bpresentorg
- Facebook: https://www.facebook.com/bpresentorg
- Twitter: https://www.twitter.com/bpresentorg
- Other: https://www.linkedin.com/company/b-present/
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