Influential Woman · Advocacy and consulting for mesothelioma and rare diseases
Heather Lynn Von St James
Owner, One Lung Legacy LLC
Roseville, MN 55113
Her Story
About Heather
Heather Von St James brings approximately 20 years of experience to her work as a mesothelioma patient advocate, consultant, speaker, and storyteller. Based in the Minneapolis–Saint Paul area, she began her professional career in cosmetology and was part owner of a large salon company before her life changed dramatically following a diagnosis of malignant pleural mesothelioma shortly after the birth of her child. After undergoing extensive treatment and surgery that resulted in the removal of her left lung, Heather was unable to return to salon work. Her physician recognized her ability to connect with others and invited her to speak at new-patient orientations in Boston, an opportunity that launched her lifelong commitment to patient advocacy. Since 2006, Heather has used her lived experience to support individuals and families affected by mesothelioma and other rare diseases. Over more than two decades as a survivor and advocate, she has become an internationally recognized voice in the mesothelioma community, speaking at asbestos and health conferences across the United States and around the world. Her work focuses on patient education, community outreach, environmental and policy awareness, storytelling, and helping people navigate the challenges of diagnosis, treatment, and survivorship. She has also contributed extensively as a writer and blogger and has worked with organizations serving the mesothelioma community. Today, Heather is the Owner, Consultant, and Advocate behind One Lung Legacy LLC, where she provides consulting and advocacy support to law firms, organizations, nonprofits, and individuals affected by asbestos-related disease. She also coaches patients as they navigate their diagnosis and works to ensure that lived experience and patient voices are meaningfully represented in healthcare and advocacy conversations. Drawing on her background in cosmetology, leadership, coaching, and public speaking, Heather champions ethical practices, authentic storytelling, and the courage to challenge conventional thinking. As a long-term survivor, she continues to transform her personal experience into a platform for awareness, connection, hope, and lasting impact.
Her Interview
Ten minutes with Heather
01What do you attribute your success to?
I attribute my success to being unafraid to put myself and my story out there. Because there is no traditional career path or established academy for becoming a patient advocate, I have had to be willing to step forward, create opportunities, and build my own path. By sharing my experience openly, becoming involved in rare disease initiatives, speaking at conferences, and building meaningful relationships across the healthcare and rare disease communities, I have been able to establish a stronger voice and presence in the field. I see myself as a trailblazer, not only using my experience to advocate for others but also helping create opportunities for patients to become advocates themselves.
02What advice would you give to young women entering your industry?
I would advise young women entering advocacy to never give up when things get difficult and to recognize that advocacy naturally comes with periods of progress and setbacks. Some days may feel as though you are making little impact, while others may bring opportunities to influence important conversations and create meaningful change. Your level of involvement and how far you go ultimately depend on your drive, determination, and willingness to step forward. Put yourself in spaces where your voice can be heard, reach out to influential people, and do not be afraid to promote your work and share your perspective. As women and entrepreneurs, we sometimes have to advocate for ourselves because no one will champion our work quite like we can. You may feel uncomfortable putting yourself out there, but taking those chances can open doors, build relationships, and create opportunities that would not otherwise exist.
03What are the biggest challenges or opportunities in your field right now?
The biggest challenge in my field is the emotional and personal weight of advocating for people facing a terminal cancer diagnosis. Helping patients find the right resources, support, and information is incredibly meaningful, but it can also be difficult when the disease does not respond to treatment and the outcome may not be what we hope for. Another challenge is making sure patients and families can find me when they need advocacy and guidance. My role is to provide hope, share knowledge, and help people make the most of the time they have, while also navigating the emotional and spiritual realities that come with a serious diagnosis. Despite the challenges, I see tremendous opportunity in raising awareness, connecting patients with resources, and making sure the voices and experiences of people living with rare diseases are heard within healthcare and advocacy communities.
04What values are most important to you in your work and personal life?
The values that are most important to me, both personally and professionally, are integrity, authenticity, and ethics. I believe in being exactly who I say I am and doing what I say I will do. I want my actions to reflect my words and to set an example for others through honesty, transparency, and consistency. I believe people should see the real person behind the work, without pretense or hidden agendas. For me, what you see is what you get, and I am proud to show up authentically, imperfections and all, while remaining committed to doing the right thing.
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