After losing the beginning of her 20’s to unexplained symptoms that left her bedridden, Kaylee Silcox has become an advocate for raising public awareness on the risks and complications caused from breast implants. By sharing her personal story on various media platforms, Kaylee’s mission is to help women suffering from breast implant illness and educate others who might be considering breast augmentation surgery of the dangerous long-term effects, so they are able to make an informed decision.
Kirsten Schultz is a genderqueer writer and sexuality educator in Wisconsin. She works as a chronic illness and disability activist, with the goal of mindfully causing constructive trouble. Her blog, Not Standing Still's Disease, provides advice on how to navigate the world of illness. Recently, Kirsten founded Chronic Sex, which openly discusses how illness and disability affect our relationships with ourselves and others. She has a website at kirstenschultz.org.
Leslie is Program Officer at Breast Cancer Action, a national grassroots education and activist group. She brings a patient advocacy and social justice perspective to her work on BCAction’s screening, diagnosis and treatment priority area and development of the organization’s educational resources. A long-time women’s health advocate, she previously worked for a feminist health collective providing reproductive health services, counseling and education. She holds a MPH from Emory University.
Jannie Lindsay has over 20 years’ experience in health information management. She earned a BS in Biological Sciences from UMCP. Ms. Lindsay has been a health and education advocate with local, state, and national organizations. As President of the Baptist Nursing Fellowship-DC she led the network to promote health in congregations and communities in DC, MD, and VA. Ms. Lindsay's latest endeavors have centered around community based participatory research with GHUCCTS.
Jen grew up with juvenile idiopathic arthritis and is now a healthcare researcher and advisor. She earned her PhD in Environmental Medicine at NYU and serves as a Patient-Centered Outcomes and Quality Specialist at Columbia. She is a consumer/patient representative on many panels and committees, including the FDA’s Arthritis Advisory Committee. She recently started Savvy Cooperative, a patient-driven co-op that facilitates patient and professional collaboration in healthcare innovations.
Michele Buc, MSC is a professor of Communications in Nashville, where she also sits on the advisory board for a Nursing School. Ms. Buc has taught communications for 25 years, while doing consulting and corporate/non-profit marketing. As a patient, Ms. Buc was diagnosed with two congenital heart defects in 2013, and currently is under treatment at Cleveland Clinic for them.
Ms. Ahmad is a lifelong Washingtonian. She became involved with the health and wellness movement in her late teens. As part of this movement she transitioned to a vegetarian diet and studied alternative medicine and health. Imagine her surprise when she was diagnosed with Invasive Ductal Carcinoma (IDC) in the fall of 2010. Her friends with breast cancer offered her knowledge and support through her experience. Ms. Ahmad is involved in several breast cancer related organizations.
In 2001, William relocated to Durham, NC for his dream job and to adopt two children. After his move he was shocked to learn he had chronic hepatitis C (HCV). After enrolling in several clinical trials, he started a 20-week regimen and was pronounced cured in March 2015. The American Liver Foundation selected William to be a member of the National Patient Advisory Committee. William has given online magazine/video interviews and spoken with legislators about funding for liver disease research.
Kathy Webster was born with a congenital heart condition and has been a patient all of her life, having her first heart procedure at age four, and two open heart surgeries, one 46 years ago and one 11 years ago. She regularly sees a cardiologist. Kathy serves as Chair of the Board of WomenHeart, the National Coalition for Women with Heart Disease. She speaks locally and nationally as a community educator about women and heart disease. She is retired from the Federal Reserve Bank.
Ron Remke is a retired electrical engineer/scientist/manager and spent most of his career at Bell Labs. He retired in 2011 and has spent the last five years volunteering full-time at his church. He is married and has three children. He was diagnosed with prostate cancer in 2006 and subsequently had his prostate removed using the da Vinci robotic technique. In 2011, his PSA started to rise and he is presently on ADT (PSA is undetectable).
Ritza is a retired Army Nurse Corp Officer who served her country honorably on active duty for 26 years. In May 2012 she awoke with a deviated jaw with no warning. After seeing over 50 providers, Ritza was diagnosed with a degenerative joint, which was replaced with a prosthetic joint. She underwent two failed surgeries at a military facility, which left her with a deviated jaw, misaligned teeth, and the inability to speak. Ritza knew she had to take the lead to serve as her own advocate.
Gillian has a Master’s Degree in Clinical Social Work from George Mason University and is a Licensed Social Worker in Virginia. Her experience includes Oncology Counseling with INOVA Hospital System, Intensive In-Home Counseling with children and adolescents, and Case Management with families and individuals who are homeless or close to losing their housing in Reston. Gillian has been diagnosed with Sarcoidosis, degenerative discs, hypersomnia and ADD. She has been in treatment for Sarcoidos
Cynthia McCrea is the founder of Salon Rx, LLC (St. Louis, Missouri) and an Air Force Veteran. She began Salon Rx, a Durable Medical Equipment business, to celebrate survivors in 2007. Cynthia is a Certified Cranial Prosthetics/Medical Hair-Loss fitter, Certified Therapeutic Compression Garment fitter and Mastectomy/Lumpectomy fitter. Most recently, Cynthia has become the State of Missouri’s Legislative Liaison for the National Alopecia Areata Foundation.
Tracy works in an administrative capacity for the University of Washington Department of Global Health. Her personal interest in Patient Safety advocacy began with a dental malpractice experience. Her fight to get treatment and answers led her to join Washington Advocates for Patient Safety. Her advocacy work with WAP’s has included educating the public on health safety and patient empowerment, providing counsel and support for patients and family members, and working on legislative initiatives.
Preethi is currently working in the Regulatory Affairs department of a Contract Research Organization in order to get firsthand experience in the drug development process. Prior to this, she attended UNC-Chapel Hill where she was active in a few patient advocacy organizations such as Relay for Life and Active Minds. She has always been interested in healthcare and has focused those interests on furthering her knowledge in order to be able to better advocate for change.
Jonathan Furman has 15+ years of experience living with the permanent side effects of fluoroquinolone antibiotics. It wasn’t until 2012 and the 5th administration of a fluoroquinolone that he began to suspect that the drugs were harming his health. He learned that physicians are often not aware of the risks associated with such popular drugs and are unable to diagnose and treat side effects appropriately. Since then he has been an advocate for the full disclosure of the risks of fluoroquinolones
Veverly Edwards is Robyn Edwards’ mother and a Patient Safety Advocate with Consumers Union Safe Patient Project. She has a Master’s degree in Organizational Learning and Leadership. She is working towards a Master’s in Fine Arts in Creative Nonfiction. She is an author and is currently working on her second book. Before she relocated to Memphis, Tennessee in 2015, she was the Health Committee Chair of the Orange County branch of the NAACP.
Robyn O Edwards is one of few people who has survived a declaration of brain death by a medical team of doctors. On October 9, 2007, at the age of 13, she was declared brain dead due to a drug that caused a massive stroke. Since then she has graduated high school and attended college. She is a poet and member of the Spartan City Poetry Club in Memphis, TN.
Amanda had to undergo major surgery after complications related to the female sterilization device Essure. Her advocacy efforts contributed to the FDA calling a safety hearing which resulted in a Black Box Warning as well as additional clinical studies to gather more data about the health risks of Essure. She is vice-president of ASHES (Advocating Safety in Healthcare, E-Sisters) which focuses on improving our drug and device approval system as well as patient safety.
Julie Childers is the executive director of Our Bodies Ourselves, a women’s health organization that promotes women’s reproductive and sexual health through education, advocacy, and strategic partnerships. Prior to joining OBOS, Julie served as the vice president for sexuality education at the Planned Parenthood League of Massachusetts and as the assistant director at the UCLA Center for the Study of Women. Childers holds a Ph.D. in sociology from Boston College. www.ourbodiesourselves.org
Julie Cerrone is the Patient Influencer Network Director for WEGO Health, a certified Holistic Health Coach, a Yoga instructor and a health activist blogger (itsjustabadday.com) thriving with psoriatic arthritis & avascular necrosis.
Diana Artemis is a systems analyst/process improvement professional who became interested in patient safety after a simple hip replacement in 1992 was caused 10 years of repeat surgeries to correct the heterotopic ossification that resulted. The implant failed in 2002, requiring extensive surgical reconstruction. She has since applied her professional background to evaluate healthcare providers’ performance.
Stuntwoman, actress, Mom and breast implant victim, Chandra is co-founder of The Breast Implant Victim Advocacy. Her mission is raising public awareness on breast implant illness and complications, including Breast Implant-Associated Anaplastic Large Cell Lymphoma (ALCL). She encourages women to love their natural bodies and informs them of the dangers of the long-term effects of breast implants. She’s also working with victims of other medical devices to bring attention these issues.
Shortly after Ramona was diagnosed with diabetes, she was invited to attend an event called Boot Camp. From the original meetings she went on to become a patient representative on a steering committee, which developed a grant to study alternative methods of treatment for diabetes for the University of Colorado. This project led her to become a member of a pSCANNER stakeholder advisory board, which is developing a network to share medical data. She is also a member of a pSCANNER CO-design team.
Jackie Zimmerman is a writer, graphic designer, and entrepreneur based in Livonia, MI. She is the Executive Director and founder of Girls With Guts and lives with both ulcerative colitis and Multiple Sclerosis. After navigating a few years of very severe ulcerative colitis and a handful of surgeries, she started Girls With Guts. She currently works for Girls With Guts and for WEGO Health - where it is her day job to connect with chronic illness patients across the globe.
Angela Waller, is an eleven year breast cancer survivor and is dedicated to educating women of color about breast cancer. Angela is the community relations manager for Loretto Hospital. Angela, an activist, has provided survivorship testimony on the local, state and federal levels and works with several advocacy and health centric organizations. Her advocacy expertise have been utilized by Chicago and Illinois Departments of Public Health, the University of Illinois at Chicago, CDC and the DOD.
Janet Wallace Schiel has been an advocate for seniors for 6 years. She started her business, Guiding Hand Senior Resources, in 2011 after caring for her mother who had Parkinson’s and dementia. She helps seniors and their families understand the legal and financial aspects of long-term care and advocate for them in anyway necessary. In June of 2016, Janet’s husband was killed by a drug reaction that causes individuals to brutally take their own lives. She has vowed to be an advocate.
Stephanie is a native of Denver, CO from a mixed Native American and Latino familial background. She has over 20 year experience working with marginalized communities to address social determinants to health and health equities. She has extensive experience in grant writing, grant reviewing and providing training and technical assistance (TTA).
Tami Rich used her background in healthcare quality and patient experience improvement to care for her son Jameson, diagnosed at birth with complex heart defects. As his full-time case manager from ages 9-19, she coordinated care from 13 specialists and helped him survive a medical mistake. Despite missing 40% of high school, Jamie graduated college and is now a writer, filmmaker and patient advocate in New York.
Casey Quinlan covered her share of medical stories as a TV news field producer and used healthcare as part of her observational comedy set as a standup comic. So when she got a breast cancer diagnosis five days before Christmas in 2007, she used her research, communication, and comedy skills to navigate treatment and wrote “Cancer for Christmas: Making the Most of a Daunting Gift” about managing medical care, and the importance of health literate self-advocacy.
Cal Pierce has been a participant and co-facilitator of the Washington, DC support group of the Thyroid Cancer Survivors’ Association. He often serves as facilitator of monthly meetings that include newly diagnosed patients and longer-term survivors, helping them deal with the medical and personal challenges of diagnosis, treatment, and follow-up. At the association’s regional workshops and its annual International Thyroid Cancer Survivors’ Conference, he has led roundtable discussions.
Kari Olson, APRN, CNS is an Advance Practice Nurse Leader for a large Minnesota health system. Since starting her nursing career in 1991, she has held a variety of clinical, administrative and programmatic leadership roles. The majority of her career focus has been on the care of palliative, neuroscience and stroke patients, including the development of the JC certified Primary Stroke Center and the DNV certified Comprehensive Stroke Center at her local hospital.
Judy Nash is the mother of two - her son has 3 girls and her daughter has 1 daughter. She has had 3 heart surgeries starting at 10 years old - the most recent an aortic valve replacement. This led her to become an ICU - ER nurse. Now she and her husband own a copier company, which they have run for over 30 years. She has been a WomenHeart Champion since 2002, serving on the National Board, and as a group leader. She enjoys finding different speakers for the once a month WomenHeart meetings.
Ms. Morris is Program Director-Community Outreach of the UCLA School of Medicine-CTSI Community Engagement & Research Program and Co-Director of Intergenerational Initiatives at UCLA Division of Geriatrics & Internal Medicine . Ms. Morris is responsible for organizing, planning and directing operations for multiple projects focused on efforts to reduce health disparities in Los Angeles communities.
Angela Lundberg is from Minneapolis, MN and has been a patient advocate since she was diagnosed with rheumatoid arthritis (RA) in 1997--right after graduating from high school. The diagnosis was a devastating blow, yet Angela vowed to not let RA stop her from living a full and meaningful life. She began blogging about her experiences with RA in 2007 (inflamed.wordpress.com) and also writes for RheumatoidArthritis.net.
Mahshid Lotfi has a long-term, solid background in teaching and research in healthcare and in international nutrition issues. She graduated from the University of London, UK with Masters and PhD degrees in physiological nutrition. She has worked in Canada, several European countries, and US on issues related to improving health. Recently, she has joined the Back-Pain Patient Advisory Group of the University of Washington in Seattle.
I have been working for over 20 years in Denver as an advocate for homeless people since I became chronically homeless in 1995, when my youngest daughter was in a near fatal car accident in Philadelphia from where I was born. My goals are to survive long enough to see housing and health care restored to the level it was for my family when the patient and the doctor came first. Housing is healthcare. I work as an advocate with the Colorado Coalition for the Homeless.
Jack Lennon is a lifetime kidney patient, born with post-urethral valves, he has experienced the highs and lows of hemo and peritoneal dialysis, three kidney transplants, rejection episodes, and all of the co-conditions and medical side effects that stem from kidney disease and the complicated treatment regimens. Jack, following his passion for improving care for children with kidney disease, joined Cincinnati Children’s Hospital in the Division of Nephrology.
Thelma D. Jones has more than six years of experience as a community breast care navigator and more than 35 years of experience in civic activism in the Washington, DC Region and North Carolina. As a cancer survivor and founder of the Thelma D. Jones Breast Cancer Fund, Jones pursues the grassroots' organization mission to advocate and improve the overall health and wellness for women and men through outreach, education and prevention.
Bridgette is the Executive Officer/ Founder of Cierra Sisters, Inc. an African American Breast Cancer organization, which provides support, education and advocacy about women’s health. She is a two time, 21 year survivor, diagnosed on her 35th birthday. She has developed a health evidence based toolkit. Bridgette’s trips to Africa have allowed her to train women globally concerning breast health.
Marian Goldberg is a retired social worker with over forty years of practice in the fields of alcoholism, substance abuse, criminal justice, education and disabilities. She has also worked as a consultant/trainer. When Ms. Goldberg, became an injured victim of Transvaginal Mesh implantation, she joined others who testified to advocate for change in FDA policy and regulation for medical devices.
Jessica Gimeno is a health activist, writer, and public speaker. Her TEDx Talk, "How to Get Stuff Done When You Are Depressed," has surpassed 700,000 views. Jessica's website, Fashionably ill (www.jessicagimeno.com), is about surviving pain– mental and physical– with style and humor. Jessica is also a contributor to The Huffington Post and a member of the Healthcare Rights Coalition. Jessica has been featured in NBC News, everydayHEALTH, BuzzFeed, The Mighty, and Health Central.
Kristina Kaiser has actively worked to support and promote safer, more effective health care since 2013 after her daughter and father died from adverse drug reactions and medical error. Kristina’s main goal is to reduce adverse outcomes by ensuring patients and caregivers receive fully Informed Consent prior to treatment.
Ann Fitzpatrick is a resident of Arlington, VA and a Board member of the SCAD Alliance. SCAD is described as spontaneous coronary artery dissection. Ann is a SCAD survivor and an advocate for women's heart health. Ann also serves as a WomenHeart Champion. Ann has a MHA from University of Minnesota, and a decade of experience as a hospital administrator at Duke Medical Center.
Penelope Burau is an administrator for the Essure Problems group and numerous subgroups of the Essure Problems group. She joined the group after experiencing severe side effects from the Essure medical device. One of the ways that she helps is by being extremely active with helping women to find the information they need in regards to the Essure device.
Imani, from Philadelphia, PA was elected in 2014 by 3rd ward constituents to represent 628 families. Her professional background and focus on community has provided her with a number of opportunities and leadership roles including; pharmacy liaison for CVS, vice-president of a 465 Philadelphia Housing Authority complex, Project Coordinator for Urban Affairs Coalition (50+ non-profit organizations) and several years as a Legislative Assistant with Pennsylvania House of Representatives (186) .
Veverly Edwards is Robyn Edwards' mother and a Patient Safety Advocate with Consumers Union Safe Patient Project. She has a Master's degree in Organizational Learning and Leadership. She is working towards a Master's in Fine Arts in Creative Nonfiction. She is an author and is currently working on her second book. Before she relocated to Memphis, Tennessee in 2015, she was the Health Committee Chair of the Orange County branch of the NAACP.
Jamee Cook is an advocate for raising public awareness on breast implant illness and complications, including Breast Implant-Associated Anaplastic Large Cell Lymphoma(ALCL). She is part of an informal organization called Breast Implant Victim Advocacy, working with victims of other medical devices to bring attention to these issues. They are pushing for better for informed consent and improvements in a flawed approval process and legal limitations for patients who have been harmed.
Janet Holt is a restaurant owner of multiple franchise units and cattle rancher of Angus and Polled Hereford Cattle. She’s also a survivor of transvaginal mesh implanted in 2007. After undergoing 14 mesh-related reconstruction surgeries, she is a survivor turned patient advocate. She has given testimony at the Institute of Medicine on public health effectiveness of the FDA 510(K) clearance process and held testimony at the FDA three times.
Tegan is Program Director at the International Foundation for Functional Gastrointestinal Disorders (IFFGD), where she is involved in the design, implementation, and facilitation of educational and outreach initiatives that inform, assist, and support people affected by chronic gastrointestinal disorders. IFFGD works with patients (adults and children), their families and friends, physicians and other investigators to broaden understandings of GI disorders & encourage research.
Rose is a nationally recognized cancer advocate and cancer survivor. Her experience includes appearing on national television (MSNBC) to speak about cancer care, meeting with legislators in Washington, DC on cancer policy issues, and developing cancer programs. Rose was brought to the Community Oncology Alliance to develop its patient advocacy program. Rose was a young mother when she was diagnosed with cancer and participated in the groundbreaking Herceptin trial.
Raylene Hollrah became a 2-time cancer survivor by the age of 40: breast cancer at age 33, BIA-ALCL at 40. Raylene started the Just Call Me Ray Foundation in 2013 to help educate women on early breast cancer detection, the dangers of implants, and rising up when bad things happen. Raylene is a wife, mother, business-owner, friend, mentor, coach, non-for- profit director, and patient advocate for BIA-ALCL.
Dr. Kevin Kavanagh is currently Board Chairman of Health Watch USA, a patient advocacy and research organization, and is an Associate Editor for the Journal of Patient Safety. He was a CDC & ATSDR Honor Award Nominee in 2014. He has served on the CMS Hospital-Acquired Condition Reduction Program’s Technical Expert Panel (2014; 2015) and the AHRQ Standing Working Group on Quality Indicators for 2016-2017.
Meghan Mimnaugh is a Data Coordinator/Hospital Liaison for the National Perinatal Information Center (Women and Infants Hospital) in Providence, Rhode Island. Ms. Mimnaugh supports all processes of the Joint Commission Vendor responsibilities as well as producing and reviewing quarterly and yearly data reports for member and military hospitals. She is also an Advocate for the Peggy Lillis Foundation, which supports the education and awareness of C. difficile.