Hetlena has been integral in bringing lupus to the forefront of awareness in South Carolina. Her main goal is to raise awareness of and advocacy for lupus patients, like herself, in South Carolina. Hetlena now serves as the Chief Volunteer Officer of the newly transitioned LFA South Carolina Community Partner (LFASCCP). She leads and coordinates the training of support group leaders in the state of South Carolina. Her work with lupus sparked a partnership with the Institute for Partnership to Eliminate Health Disparities (IPEHD) Arnold School of Public Health of the University of South Carolina to spread the word on the development of a South Carolina Lupus Registry. Hetlena’s flagship company, The Lupus Liar, allows her to educate, advocate and raise awareness about lupus as a highly sought after speaker, critically acclaimed author, coach, presenter and trainer. She is well-versed in data management, community awareness strategies, and lupus education presentations.
I am a former news journalist, turned lupus advocate who uses her candid experiences of living with lupus, chronic illness and an invisible disease to spread awareness, particularly among underserved populations. I have the unique perspective of a patient advocate and the skills of a professional journalist and copywriter to see the whole story and public relations angles. I'm also able to make complex content digestible for the general public. I've provided lupus education through many platforms, including legislatively and through social media and radio work. I am interested in connecting with and creating effective content for healthcare companies that are looking to include an authentic, patient voice at the table.
Advocacy work includes:
Feature by the US Department of Health and Human Services’ Office on Women’s Health to highlight Lupus.
2016 WEGO Health Activist Hero Nominee
2017 Lupus Research Alliance Patient Advocate for Annual Advocacy and Hill Day in D.C.
I am a freelance journalist specializing in researching and writing about health related issues. My interest in this field began when I was diagnosed with a little known chronic blood disorder (ITP) and had to do the research to find out exactly what I had. I am also a full-time caregiver for my disabled husband and have interviewed health professionals and other caregivers to succeed at this task.
I have used my skill at searching out answers to write articles for newspapers, blogs, websites, etc on various health related topics.
I'm an Patient Advocate and a Patient Expert. I work with patients. I volunteer to help patients. I represent patients through advocacy work both locally and on Capital Hill. I'm the Founder and CEO of a patient organization. Most importantly I am a patient.
I represent patientsgive the patient perspective and ensure that the patient voice is taken into consideration during the entire product development process. I participate in patient required Consumer Reviews, Patient roundtables, advisory boards. I'm
Encourages awareness and utilizes social media to help educate patients, providers, physicians, pharma, and key healthcare stakeholders on health, the e-patient movement, participatory medicine, healthcare social media, and lupus. Community manager for more than five successful social media outlets. Public speaker/panelist at numerous prestigious health conferences such as Health Datapalooza, ONC National Health IT Summit, ePharma. Advisory board member for health organizations, pharmaceutical companies focused on drug development, healthcare startups. Freelance writer & copy editor.
I went from pediatric cardiac patient to pediatric cardiac nurse, and somewhere along the way I was diagnosed with a slew of other diseases- systemic lupus (with many overlapping autoimmune diseases), cervical cancer, and had a double mastectomy after a pre-cancerous lump was found in my breast. Fun times.
When my nursing career had to be put on hold due to my deteriorating health, I began a new career as a patient advocate/influencer. I started my blog, Luck Fupus, in 2012, and have since used that as a platform to travel the country and share my (crazy) story, discuss hot button topics like patient centricity and transparency, and be the voice for patients. I've received scholarships to attend and speak at a variety of healthcare conferences including Stanford MedicineX, PCORI Annual Summit, MMM Transforming Healthcare, Patients as Partners and many more.
My name is Ashley Boynes-Shuck. I live with several autoimmune diseases and musculoskeletal disorders, in addition to chronic migraine syndrome. I began my work as patient advocate and patient leader about a decade ago as a Community Development Director for the Arthritis Foundation. Since then, I've cultivated an online persona called Arthritis Ashley, a Facebook community for young people with arthritis called Rheum to Grow, and I have amassed 40,000+ followers across all of my social networks. I have authored 3 published books, two of which are health memoirs, and am a certified health coach. I've consulted with pharmaceutical companies on marketing and advertising. I have served as a Community Manager and Content Director for an arthritis-friendly pharma website. And Oprah Winfrey has even tweeted me about my advocacy work! Currently, I consult with the Autoimmune Registry working on patient engagement and social media efforts, and I am an arthritis reporter for Healthline.com.
I have been working with patient communities and health activists for 20+ years, helping dozens of companies (including biotech, pharma, recruitment firms and CROs) recruit patients for clinical trials through influencer-driven innovative digital programs. If you're interested in adding a patient influencer strategy to your recruitment efforts, please contact me.
Health Activist / Patient Advocate / Speaker / Patient Engagement / Brand Ambassador
Currently representing the Lupus community as the "Face of Lupus" for the International Pain Foundation.
My story "Living Well with Lupus" isa chapter in Jan Oldenburg's book "Participatory Healthcare" about patient engagement in today's healthcare system.
Presented at the 2016 "Connected Health Conference" for the "Patients as Innovators and Partners" panel.
The British Medical Journal published my article on the impact of Social Media in Patient Communities.
Represented the Lupus Foundation of America and the Lupus Research Institute as a empowered patient advocate on Capitol Hill.
Actively participated in advocacy in person & online.
Shared my story at #TEDMED on stage "Great Challenges" ambassador
Presented iat Lincoln Center on Community Engagement as a Brand Ambassador.
Moderated a panel of patient activists and shared my Lupus journey at the 92nd Street Y in New York City.
As a graduate from Rutgers University's Exercise Science and Kinesiology Program, I have extensive knowledge in the physiology of organ systems, and how exercise and nutrition affects that as well as the biomechanics of the joints. Since graduating, I have research experience in regenerative medicine, and will be pursuing my MPH at NYU. This past year since being diagnosed with lupus, I started a health and wellness blog called The Positivity Project (the-positivityproject.blogspot.com) to educate others what it is like to live well with a chronic condition and how to keep a positive mindset no matter what life throws at you! I hope to consult others on how to live the most fulfilling life that they can.
I work in autoimmune patient advocacy, primarily with Inflammatory Bowel Disease (IBD) and ostomies. I'm available to work on different social media platforms and on many different levels.
Ken Taylor has be a caregiver since 2003 for his wife who has multiple chronic pain diseases. Ken is a former licensed insurance agent. Ken worked in the banking industry for 12 years at MCM, Bank of America, Wells Fargo, and Neiheisel Law Firm. Currently, Ken is a broadcast engineer for Dish Network. Ken also serves as the VP of the International Pain Foundation, is on the board of advisers for Pain Pathways Magazine, is the graphics editor for iPain Living Magazine. Ken serves on several pain advocacy coalitions including the Consumer Pain Advocacy Task Force and State Pain Policy Advocacy Network. He is an Amazon best selling author, motivational speaker, and Reality TV Personality sharing his story of caregiving and helping others better understand the healthcare system.
Prior to being diagnosed with Rheumatoid Arthritis, Sjogren's Syndrome, and eventually Axial Spondylitis, I was a public speaker, college teacher, and executive level business development professional & project manager. Unable to work normal business hours due to my disease limitations I translated my skills to the nonprofit world, focusing on an unmet need to group like diseases together to promote earlier detection, referrals, diagnosis, & access to treatments. I am exceptionally savvy in patient collaborations in regards to the R & D continuum (all phases) & am an asset on advisory panels or as a meeting speaker on patient engagement (specifically with industry). I currently hold the solo chair as a patient reviewer of grants at NIAMS/NIH, so anything with research process/development is a good fit for me. I would be a great candidate for teaching pros of patient engagement, how to engage, & what patients most want from researchers & industry.
I have worked as a professional journalist for the past nine years, both salaried and freelance. Media outlets I have worked for include Gannett (USAToday/Democrat & Chronicle), U.S. News & World Report, Huff Post, Reader's Digest, Hearst, Christianity Today and more.
My writing expertise spans health, autoimmune disease, women's health issues, nutrition, expert recipe creation, and diet. Other topics I have published in include fashion, travel, and Christian topics.
In addition, I founded LupusChick 501c3 & LupusChick.com eight years ago. We are one of the fastest growing autoimmune communities, and currently serve approximately 200,000 visitors per week. Our nonprofit side has raised money & awarded five scholarships to Lupus patients since our inception. I run the blog, website and social media for LupusChick. Last, I am a published author and released my first book, Lupus: Real Life, Real Patients, Real Talk in 2013. My second book, a memoir, is set to debut on April 23, 2017.
I became ill in 2001 and over 4 years saw 51 specialists that could not diagnose my illness. I was handed a Medline study from Christopher Reeves' Neurologist and was told to find the surgeon that performed that study. It lead me to Pittsburgh & Dr Peter Jannetta, Godfather of Modern Neurosurgery. He saved me from becoming a quadriplegic & worse. I never imagined I would develop multiple Rare Diseases at 31 yrs old, I had to learn to live a new limited life and the only way to start was with knowledge, then with helping others when I was well enough, and I have never stopped. I am a Leader in the Rare Disease Community, a Healthcare Activist, and Lobbyist. I have been fortunate to work with 1000's of Rare Disease Patients, Health and Disease Organizations and Foundations, Healthcare Stakeholders and learned from them all. Now I try and improve Healthcare one day and project at a time.
I have been a patient expert in Lupus, APS, Factor V Leiden, Sjogrens and Raynauds since 2004. I was diagnosed with intractable migraines in 2015. I was diagnosed with Myasthenia Gravis in 2016, and am quickly becoming a patient expert in that as well. I have been a patient advocate and expert in mental illness since 2002, as my children battled severe childhood mental illnesses - bipolar disorder, schizophrenia, obsessive compulsive disorder, ADHD, and generalized anxiety. Though my children are now teens and young adults, I still advocate for their mental health today.
I am an expert on chronic pain, and can speak to chronic pain alternatives, such as Topamax and Ketamine.
Bonnie and her team consults with entrepreneurs and startups developing products and services to improve all aspects of autoimmune care. Our mission is to exploit the convergence of digital tech with science and patient activism to publicize the invisible epidemic, reimagine research and empower patient communities, to advance towards individualized autoimmune diagnosis, treatment, coaching and care coordination. Our vision is to help patients progress from managing disease to living their healthiest selves and preventing disease in their children and grandchildren. Over the past two years, Bonnie has interviewed 200+ start-up companies and presented at or attended 50+ digital health meetings, speaking on behalf of the 50M+ autoimmune patients around the world. With a unique body of experience as a healthcare provider, researcher, analyst and patient, Bonnie can help you bridge the autoimmune abyss.
A Lupus and Raynaud's patient with academic training in the physical (biochemistry, human genetics) and social sciences. Healthcare Community Manager and co-host of an online Twitter chat that provides various resources for members of the Lupus community. I have worked with legislators, patients, community leaders, and health technology experts toward improving patient care and ensuring that patients (as prominent stakeholders) are present in every step of the healthcare process.
Leslie Rott has a PhD in Sociology from the University of Michigan and a Master's Degree in Health Advocacy from Sarah Lawrence College. She authors the blog Getting Closer to Myself, and has been active in the patient advocacy community since her diagnosis with lupus and rheumatoid arthritis in 2008. She has written for a variety of health sites and has attended a variety of conferences, including as a speaker at Stanford Medicine X.
She currently lives in Michigan.