Patient Insights Board Members

Dave Bjork is a lung cancer patient advocate and research evangelist with more than 25 years of progressive experience in community-building, nonprofit fundraising, and patient engagement and empowerment leadership. He is currently Senior Vice President of Empowerment for GRYT Health, working on a team to provide patient-centric solutions to GRYT Health’s pharmaceutical and healthcare clients’ most challenging problems to help them better address patient needs. Dave is also host of the Research Evangelist Podcast where he interviews people in life sciences doing meaningful work. In addition, he is an advisor to Medidata Solutions where he serves on the Patient Insights Board team to bring the patient voice to the clinical trial experience. Previously Dave spent 8 years leading nonprofit fundraising and advocacy teams, including 4 years as Vice President of Development for National Foundation for Cancer Research where he was responsible for all fundraising and advocacy efforts. 

A lung cancer survivor, Bjork has made it his life mission to connect patients, biopharma companies, academic institutions, and other key influencers to forge strong partnerships to focus on research. He also advocates for and builds bridges between patient groups and the biopharma industry. He proudly serves on the Advisory Board of the Cancer Epigenetics Institute at Fox Chase Cancer Center. Dave earned a BS in Economics and Finance from the Wharton School at the University of Pennsylvania.

Ella Balasa is a patient advocate, consultant, and a person living with cystic fibrosis – a rare genetic lung disease. She was diagnosed at 18 months old and has experienced countless hospitalizations since being a child. Because of her healthcare experiences, Ella has committed her time to empowering patients and advancing research and healthcare strategies through her connections with researchers, pharmaceutical companies, and patient organizations. Having a biology background, she advocates for the development of novel therapies for the treatment of antibiotic-resistant infections, which have significantly affected her life. She has spoken publicly about this issue as well as value of the patient voice within research at healthcare conferences, at the FDA, on various podcasts, and congressional meetings.      

Ella believes in the importance of engaging patients to be active participants in healthcare by empowering and educating them to collaborate with stakeholders to improve disease outcomes. She contributes to clinical trial development, various research committees, and in developing patient engagement initiatives.

Ella also has a passion for writing, distilling clinical information for patient communities, and sharing introspectively about her healthcare experiences and the hardships yet triumph that comes with living with a chronic illness. She has been published on numerous platforms including MedPage Today, HuffPost, BMJ, and in Pulmonary Therapy Journal. She has been recognized as a 2022 Health Union Social Health Award winner for Healthcare Collaborator and serves on patient committees with non-profits like the Cystic Fibrosis Foundation and the Everylife Foundation. Through opportunities working with healthcare organizations and sharing her journey through writing, she aims to affect the healthcare landscape to promote self-advocacy to patients and valuable insights to organizations. To view more of her work and experiences visit www.ellabalasa.com.

Mindy Cameron has been embedded in the patient advocacy community for over 18 years as a parent of a young adult with Duchenne muscular dystrophy and as a professional advocating for those affected by rare disease.  She has personally experienced the ups and downs of a rare disease diagnosis and has also picked up an abundance of knowledge from mentors and others along the way.  As a professional working in rare disease advocacy, Mindy has led major fundraising and disease awareness campaigns, educated rare disease communities about clinical research and the importance of their participation, and helped government officials, regulators, and industry partners better understand the needs of those living with or affected by a rare disorder.  

Mindy is a Board Director for the Muscular Dystrophy Family Foundation and serves on the Disability Advisory Committee for the City Council in  her current home city of Carmel, Indiana.  

Mindy works as an advisor and consultant for patient organizations, industry, and others in the rare disease space to ensure that the patient and caregiver perspective is included in all aspects of drug development, government decision making, and issues aimed at improving the quality of life for those affected by rare disease and mobility impairment. 

Phyllisa Deroze is a global diabetes patient advocate and Director of Research at dQ&A. She began blogging almost immediately after being diagnosed with type 2 diabetes in 2011. A year later she founded Black Diabetic Info, a website dedicated to increasing awareness of cultural-competent diabetes information from around the African Diaspora. In 2019, after becoming extremely ill, she learned that she had been misdiagnosed with type 2 diabetes for eight years and was finally given the correct diagnosis—Latent Autoimmune Diabetes in Adults, a form of type 1 diabetes.

Phyllisa has graced the cover of Health Monitor magazine and was featured in Diabetic Living, Diabetes Focus, and other magazines and newsletters. Her passion for diabetes lifestyle advocacy can be seen in her YouTube vlogs, social media posts, in-person workshops, published essays, and keynote speeches that she has given in five countries. She enjoys traveling and writing. Her recent publications include The Daily News Blues (A flash fiction story highlighting the intersectionality of COVID-19, mental health, and diabetes) and Laughing to Keep from Dying: Black Americans with Diabetes in Sitcoms and Comedies (A book chapter that merges theories in Disability Studies and American Humor).

Considered one of the most prolific writers on the representation of diabetes in African American literature and popular culture, Phyllisa builds community through storytelling by drawing on a Ph.D. in English Literature from Pennsylvania State University, a ten year career as a university professor, her Fulbright Scholar expertise, and her own experiences living with diabetes. In 2021, she returned home to South Florida with her husband and daughter after living abroad in the United Arab Emirates and Martinique for seven years. Her motto “Diagnosed Not Defeated” is an inspiration for all.

Instagram: @BlackDiabeticInfo Twitter: @not_defeated Blog: @DiagnosedNotDefeated.com

Justus Harris (he/they) is a designer, healthcare strategist, and artist with two decades of lived type 1 diabetes experience. His expertise lies at the intersection of data visualization and narratives, enabling him to communicate personal and public health insights effectively. His creations encompass the transformation of medical data into 3D-printed objects, augmented reality experiences, and intuitive 2D designs. Features include the Kennedy Center as a Citizen Artist Fellow, Stanford Medicine X as an ePatient Scholar, and TEDx as a speaker.  

His clients range from data-driven health companies such as Teledoc (formerly Livongo), One Drop, and Medidata as a Patient Insights Board member. 

As an advocate, Justus is committed to helping improve the lives of patients in the ongoing COVID pandemic, patients without access to affordable treatments, and LGBTQIA+ individuals in the EU and United States.

Chien-Chi Huang is the founder of Asian Breast Cancer Project and the former Executive Director of Asian Women for Health. A skilled and passionate community advocate, Chien-Chi was the Asian Community Program Manager at the Massachusetts Council on Compulsive Gambling from 2006 to 2011 and she spearheaded several new health initiatives addressing the unique issues and challenges facing the Asian American community. These initiatives included Asian American Problem Gambling Outreach efforts, Asian American Women’s Mental Health Symposium (now AAPI Mental Health Forum), Asian American Mental Health Forum, and Immigrants and Refugees Mental Health Network. She has participated in several CBPR (Community-Based Participatory Research) trainings and received grants from several organizations such as the Institute for Community Health Program Planning at Dana Farber, the Saffron Circle, the American Psychological Association, Massachusetts Susan G. Komen for the Cure, the Lenny Zakim Fund, Clipper Ship Foundation, Blue Cross Blue Shield Foundation, Center for Community Health and Healthy Equity, and Tufts Community Research Center.

An immigrant from Taiwan and a breast cancer survivor turned advocate, Ms. Huang has spearheaded several health initiatives in Massachusetts, including the annual Asian American Mental Health Forum and the All of Us community engagement campaign. The Workforce Development Initiative trains those who are under or unemployed and finds them jobs as community health workers, providing an upstream solution to address the unique challenges facing the Asian community.  Both mainstream and Asian media outlets have featured Ms. Huang’s efforts and culturally responsive approach to reducing health disparities related to gambling addiction, mental health, women’s health, and cancers. 

Chien-Chi is the recipient for the Cheryl Kramer Passion Award in 2011, the Trail Blazer award in 2012, the Janice McGrath Survivor of the Year Award in 2013, the honoree of the one hundred by Massachusetts General Hospital Cancer Center in 2014, and GK 50, the most influential people of color in Life Science and Healthcare in 2017, the Community Hero Award by ABCD in 2018, and the Laurel of Community Service award by the Cancer Prevention Foundation in 2019.

Under her leadership, Asian Women for Health is among one of the 6 recipients for the Peter Lee Healthy Communities Awards in 2013, with 12 nominations from partners and allies at the state-wide Ounce of Prevention Conference.

Motivated to lead through her cancer experience, Ms. Huang continues to participate in local, regional, and national efforts on health policy and research impacting the Asian community. Her passion for health equity and women empowerment has changed the healthcare landscape and created a pipeline of future Asian women leaders and peer health educators.

A powerful and passionate speaker with a compelling story, Sheila Johnson is a pioneering breast cancer advocate with a particular focus on the black community.  She has overcome personal adversity to help support and educate her community about the risks of breast cancer and how to advocate for yourself once diagnosed. “Breast cancer affects black women differently as we are proportionally dying at a faster rate due to many socioeconomic factors that affect the black community.  All women should
be given the same standard of care and the same treatment options once diagnosed with breast cancer.”  

Sheila uses her voice to raise awareness about the racial disparities faced by black women throughout their breast cancer journey. Receiving a breast cancer diagnosis is devastating for anyone, and Sheila passionately believes that racial disparities should not have an impact on the standard of treatment that black women receive.   Sheila has also taken part in a clinical trial, something that she feels is vitally important because African American women are under-represented in clinical trials. A metastatic breast cancer (MBC) survivor for 13 years, Sheila seeks to empower and support breast cancer patients and survivors, using her voice to educate and provide hope to other MBC patients.  

Sheila is a decorated United States Air Force military veteran who served for 25 years active duty.  She views every day as a chance to impact lives positively. “Every day is a new challenge for me.  Every day, I get up and I ask myself how I can make the breast cancer community a better space not only for newly diagnosed women and men but also for survivors.”  

BET produced the movie:  “In God’s Grace: The Sheila Johnson Story” https://www.imdb.com/title/tt28084920/
“Based on the life of Sheila Johnson who retired from the Air Force after being diagnosed with stage IV metastatic breast cancer and later went on to found an advocacy group to support Black women and men diagnosed with the disease.”

Sheila is a published author whose book is available on her  website: https://asurvivorslens.com/

Anne Marie Mercurio was treated for invasive breast cancer in 2006. Anne Marie was appointed to serve as co-chair of the Patient Advocate Committee at SWOG Cancer Research Network (NCI NCTN) and is an inaugural member of its Digital Engagement Committee. She serves on several advisory boards and executive committees at a various NCI designated cancer centers and a number of non-profit organizations across the country. 

She reviewers grants for NCI cancer centers and has done reviews for research proposals using other funding Mechanisms. She also reviews manuscripts submitted to the BMJ. In addition to be a patient, Anne Marie was the primary caregiver to her mom who was a metastatic breast cancer patient. That experience has helped her identify areas that require attention to address communication gaps that exist for both patients and caregivers to facilitate shared-decision making that focuses on the needs of the patient with the help of their caregiver(s).

Anne Marie’s focus in the advocacy realm is on clinical trials across the entire spectrum. She works with PI’s in labs across the country to help frame research questions, define realistic and inclusive eligibility criteria, and facilitate accrual across diverse patient populations. She is invested in finding ways to incorporate digital tools and wearables into trial protocols to best capture real world evidence. Anne Marie has been working with the Patient Cloud Design Team at Medidata to bring the voice of the patient to the design team. She believes engaging patients early and often will lead to better trial design and quicker accrual.

MarlaJan Wexler is a Registered Nurse, patient living with multiple chronic illnesses, and patient advocate. In her 40+ years, she has received diagnoses of tetralogy of Fallot, Systemic Lupus, Erythematosus, ITP, Behcet’s Disease, breast cancer, cervical cancer, Sjogren’s Syndrome, and more; she’s undergone 6 heart surgeries, a double-mastectomy, and been on chemotherapy for years. She was forced to pause her nursing career in 2012 when lupus began attacking major organs. In an effort to make a difference while out of work, MarlaJan started her blog, Luck Fupus, as a way to document and share the daily and long-term struggles of coping with several illnesses. What started as a journal of sorts, her blog became a place people on the web can go for support, up to date clinical information, advocacy, and a good laugh. She uses her platform to educate, share, and empower patients as they navigate healthcare. 

MarlaJan won the 2014 WEGO Health Hilarious Health Activist Award, and from there, her work has snowballed into what it is today. She is a two-time Stanford Medicine X, Healthevoices, and PCORI ePatient Scholar, she’s advocated several times on Capitol Hill, and serves as a patient advisor on a number of boards for life science and pharmaceutical companies. MarlaJan has traveled the world sharing her story and experiences, has given Keynote speeches at several conferences, participated in numerous panels, moderated roundtable discussions, and has been interviewed for both local and national publications and television shows, including The Today Show. 

She continues to follow her passion in making this business of being sick more palatable for those with chronic illness to navigate with her funny, witty, no filter, no sugar-coated, pithy style.

www.luckfupus.com

marlajan@luckfupus.com

Instagram @marlajan

Twitter @marlajan 

Linnea Olson is a mother, artist, blogger and advocate/activist for lung cancer, a disease she has been living with for over fifteen years.

LInnea serves on the board of the Israel Cancer Research Fund, LUNGevity’s Advocacy Council, and is a frequent presenter for Harvard Medical School’s Executive Education program. She also advises pharma and biotech companies, drawing on her experience as a participant in four phase I clinical trials. Her blog can be found at www.outlivinglungcancer.com  

https://www.4gclinical.com/blog/a-lung-cancer-patient-clinical-trial-participant-weighs-in-on-covid-19 

https://www.youtube.com/watch?v=raeLgKHYGBk

https://harvardmagazine.com/2018/05/precision-medicine-cancer