Brittany Knupper is a writer living in Los Angeles, California with her two goblins that occasionally resemble a dog and a cat. She has written for film and geek culture sites such as Nerdist, Fangoria, and StarTrek.com. When not in treatment, she spends her days tending to her ever-growing plant collection, hosting burlesque shows, and baking large cakes that she never finishes eating.
I’m Madeleine Jane, a mom and a nana, I’m from Piedmont California and graduated from UCLA with a degree in Sociology although my favorite classes were Psychology. I now live in Lake Oswego, Oregon and love cooking, entertaining, gardening and yoga.
Bob McEachern is a Follicular Lymphoma patient and advocate. Soon after his diagnosis in 2008, he started a blog to update family and friends about his condition. Years later, the blog continues to be a source of education and inspiration for FL patients and caregivers in over 80 countries. A writing teacher, Bob is a former columnist for Lymphoma News Today and a Community Advocate for Blood-Cancer.com, and has written about cancer and patient advocacy for The Mighty, Patients Have Power Magazine, and Media Commons, among other venues. He has served as a Consumer Reviewer for the Congressionally-Directed Medical Research Programs on peer-reviewed cancer research and rare cancers, and as a member of the HealtheVoices Impact Fund Advisory Board. He lives in Connecticut with his amazing wife and three kids, and slightly less amazing dog.
Yolanda is the Founder of Spitfir Productions specializing in Brand Strategy; and a former Brand Fashion Manager. She’s penned “Another Face of Multiple Myeloma”, reflecting on her journey with multiple myeloma. Yolanda is also the Executive Director of Mae’s Breath Foundation 501c (3). Mae’s Breath Foundation is a lung cancer awareness organization that promotes and provides information to the community about the disease. Yolanda is the Founder, President, and Certified Trainer of Chronic Fitness a fitness boutique service for clients with chronic conditions, who seek fitness direction. She’s currently in remission. She’s hopeful for a cure to myeloma- but until then living life as an advocate for health.
Debra Braddock (formerly Madden) is a 2-time cancer survivor who was first diagnosed at the age of 22 years as a young adult shortly after she’d graduated from college. She had been struggling with unexplained symptoms for several years–symptoms that she later learned were “classic” for Hodgkin’s lymphoma. After a particularly horrific bout of coughing during which Debra couldn’t catch her breath, her father insisted on bringing her for a chest x-ray. The moment she saw that x-ray, time was divided into “before” and “after.” She finally received her explanation: she had stage 3 Hodgkin’s lymphoma. Thus began her entry into young adulthood and a world comprised of painful biopsies, CT scans, chemotherapy, radiation, and more time spent with her oncology nurses than with her friends and new work colleagues. As many young adult cancer survivors will tell you, receiving such a diagnosis at that time of your life brings with it multiple unique, difficult challenges. And for some of us, not only does it divide time, but it shapes who we are henceforward. For Debra, it has affected every important adult decision of her life, including career choices, when to get married, the question of having children, whether and when to move, and on and on and on. And again, as with far too many young adult cancer survivors, in the years following Debra’s treatment for Hodgkin’s, she went on to develop several serious late effects secondary to that treatment, including serious cardiac issues in her 30s and a second cancer diagnosis at the age of 42: this time, stage 2 ER+, PR-, HER2- breast cancer. It was following Debra’s second cancer diagnosis that she became a nationally active cancer research advocate. One afternoon shortly after her bilateral mastectomy and reconstructive surgery and a day or so after she’d once again begun chemotherapy, she began her transition from a patient to a patient advocate. She was reading about a breast cancer survivor who decided that she wanted to gain a seat at the table with clinicians and investigators where research decisions were made. She joined the National Breast Cancer Coalition (NBCC) and applied for their extremely competitive and rigorous advanced six-day scientific course, called “Project LEAD,” that focuses on the biology of breast cancer, genetics and genomics, epigenetics, epidemiology, research design, advocacy, and more. Debra decided then and there that when she completed her active cancer treatment, she was going to apply for the NBCC’s “Project LEAD.” She applied and was as ecstatic as when she’d received her college acceptance letter when she learned that she’d gotten in. She walked into that class in Denver as a shy, recovering cancer patient and walked out as a passionate cancer research advocate with countless lifelong new friends who were fellow breast cancer survivors. She immediately started to make additional connections and shortly established partnerships with scientists and clinicians to design breast cancer research protocols, began to review breast cancer research proposals for the Department of Defense (DOD)’ Breast Cancer Research Program and other research panels, and became a member of several Scientific Advisory Committees. Further, as one who had already been a medical writer for many years, she began to write journal articles, patient educational materials, and commentary on breast cancer and other medical and health issues. As a nationally active cancer research advocate, Debra is a member of the NBCC; several committees and subcommittees with the ECOG/ACRIN Cancer Research Group; was a member of the Patient-Centered Outcomes Research Institute (PCORI)’s inaugural Advisory Panel on the Assessment of Prevention, Diagnosis, and Treatment Options, and regularly participates on integration programmatic panel grant reviews for the Congressionally Directed Medical Research Programs’ Breast Cancer Research Program. Due to her frustration with the lack of scientific rigor regarding complex medical issues reported in the popular media, she also began a blog that deconstructs and shines a light on the often misleading, sensationalized, or downright inaccurate information provided to the public in her ongoing efforts to improve health literacy and ensure that patients are able to make informed decisions as active members of their own healthcare teams. You can find her blog at https://cancerresearchadvocate.com/. Ever since her diagnosis of Hodgkin’s lymphoma, Debra is passionate about taking complex medical information and making it understandable, timely, accessible, and actionable for patients, their caregivers, consumers, clinicians, researchers, and additional audiences. In fact, she recently left her long-time position at an ambulatory neurology practice–where she served as the health information technology / electronic health record (EHR) project manager and as a clinical systems specialist after her regional hospital system acquired her practice. She did so, so that she may concentrate full time on her content writing, editing, and blogging as a freelancer / contractor on important medical and health issues. Debra wanted to establish a name and logo for her new business that captured her eagle-eye attention to detail in a whimsical, interesting way, so she and her husband came up with the name, “The Persnickety Scrivener.” He then designed a logo that highlights a bespectacled bunny busy at work editing a towering stack of work—just the way that Debra prefers it.
May 2018 I was diagnosed with stage3b colorectal cancer after a routine colonoscopy. A 7cm tumor was found in my sigmoid region of my colon. I had surgery to remove the tumor and had a resection done of my colon. I had 40 lymph nodes removed during surgery. Three turned out to be cancerous. I did six months of chemotherapy. Then in February I was found to be NED or No Evidence of disease. Since then I have work to advocate for others in the cancer space especially with men. I have work with a fellow stage IV Colon cancer survivor Trevor Maxwell to create The Howling Place group it’s a part of manuptocancer.com. It’s an emotional support group for men only to help support their fight with cancer. I always say ‘ Cancer might be done with me but I’m not done with cancer. ‘ I live in Durham North Carolina with my wife and two adult children. I know I’m a very lucky man to have survived cancer.
Rob Weker is a 25+ year pharmaceutical R&D executive and a three time cancer survivor, including pancreatic cancer. Through his unique experience in industry, as a patient and a quality improvement expert, Rob is passionate on amplifying the patient and caregiver voice throughout the entire process – from research through clinic trials and the patient journey. He considers it his personal responsibility to represent future patients as he has benefitted from the efforts of previous patients and healthcare professionals. Rob participates on oncology patient advocacy councils with two pharmaceutical companies and a large health system. He has published many articles, writes a patient blog – Through The Patient Lens – and frequently speaks at healthcare conferences. Additionally, he is involved with improving health literacy for all patients. Ultimately, Rob delivers healthcare solutions that are accessible, affordable and innovative in delivering patient/caregiver focused value. Rob and his wife live in Philadelphia, PA with their cockapoo, Coco.
Merel Hennink, wife and mother of 2, was diagnosed with stage IV NSCLC in November 2014. She started targeted therapy for her ROS1 fusion and is still, with great results, on her 2nd TKI since 2016 . Until April 2020, she worked as a program manager and a teacher at the University of Applied Science Groningen. But as advocacy work became more structured she decided to put her time and energy in the service of her family and advocacy for 100%. Early 2015, she became active in the Patient Advisory Board of Longkanker Nederland (Dutch Patient Organization), to be a face and a voice of Lung cancer in the Netherlands. In 2018, she also became an ambassador of Lung cancer Europe (LuCE, an European umbrella Organization of Patient Organization) and also represents Longkanker Nederland in the Global Lung Cancer Coalition (GLCC). She had presentations on diverse platforms (ERS, ELCC, ESMO,WCLC etc.)and is active in diverse global patient councils. In 2020 she was a mentor in the IASLC STARS program. To get more educated about her own driver mutation, she became active in the Global Initiative of the ROS1ders in 2015. In her own country, she started the foundation Stitching Merels Wereld to raise (European) awareness about ROS1, and to get research done. As a result, the Hanze University of Applied Sciences started a research course ´Merels Wereld´ in 2017. And Stichting Merels Wereld, the Hanze University of Applied Science together with the University Hospital Groningen, initiated, created, fund and implement a ROS1 research program. Every year she give lectures to (medical) students about the engaged patient and the benefits to collaborate with them.
Heather Von St James is a long-term survivor of malignant pleural mesothelioma. Upon her diagnosis over 15 years ago, Heather vowed to make people aware of this rare but deadly cancer and provide hope to new patients who found themselves in the same or similar situation. Becoming an advocate and anti-asbestos activist has been the driving force in her life since her diagnosis in 2005. Heather lives in the suburbs of Minneapolis/St Paul, MN with her husband, 15-year-old child, and numerous pets. A self-described iced tea addict, her days are spent working with new patients and volunteering with The Mesothelioma Applied Research Foundation where she is co-chair of The Community Advisory Board.
I am a two time Heart Transplant recipient, two time synovial sarcoma cancer survivor and stroke survivor.
I developed dilated cardiomyopathy at the age of 9, was on the transplant list for only 9 hours and received my first heart transplant in 1990. I suffered severe rejection in 1995, my transplant team preformed plasmapheresis and that was able to reverse my rejection. I soon after developed gastroparesis from that rejection episode, which I continue to deal with on a daily basis.
In 2011, I received my second heart transplant 20+ years after my first. I had some complications coming out of surgery, aspirated, suffered a stroke and was put on ECMO. I spent 6 weeks in the hospital, along with some outpatient PT/OT but was able to make a full recovery and was back at work 4 months later.
In 2020, I developed synovial sarcoma lung cancer and underwent a lobectomy to remove the tumor & cancer. In May 2021 I had a reoccurrence of synovial sarcoma, this time on the scalp, and had the tumor remove and again am cancer free.
Professionally, I am a supply chain executive Fortune 500 company and I volunteer with various organizations dealing with chronic illness. Personally, I’m married to my beautiful wife and we have two sons. In my spare time I enjoy anything sports related, especially playing golf, and spending time with my family.