I am a professional cancer survivorship expert working at a leading lung cancer non profit. I have been a patient advocate for over 14 years.
I have the unique past experience of being both a cancer patient and a lung cancer caregiver and I represent the voice of the patient and caregiver in all that we do as a Foundation. I am the founder of the Lung Cancer Support Community, helped start the first lung cancer 5K and in-person support group and a recipient of numerous awards and articles. I sat on the board of Global Resource for Advancing Cancer Education, past LiveSTRONG Leader, current member of AONN, ASCO and VMCC as well as collaborate with national organizations and healthcare providers across the country gaining valuable insight and knowledge. I contribute to articles & blogs and have been asked to speak at events with a special interest in cancer survivorship, patient support, caregiving, cancer advocacy training & the use of social media to promote good works.
Gabe Howard is a professional public speaker, award-winning writer, and award-winning activist as well a person living with bipolar and anxiety disorders.
Diagnosed in 2003, he has made it his mission to put a human face on mental illness, confronting the fear, discrimination, and stigmatization people diagnosed with these illnesses often face.
Gabe has been the recipient of multiple prestigious awards in the mental health community. His writing has been featured in a number of health sites online. He has worked with several respected advocacy organizations and worked with hundreds of families and individuals.
He currently hosts The Psych Central Show Podcast sponsored by PsychCentral.com, writes for bipolar Magazine, and is the author of the blog, Don't Call Me Crazy.
I advocate for all challenged with chronic pain as well as their family, caregivers, healthcare professionals & public. My speaking engagements, media interviews, and books on chronic pain inspire patient engagement filled with HOPE & motivation. I have been battling chronic pain since 1997. First with endometriosis. Then in 2002, I developed Reflex Sympathetic Dystrophy (RSD), RA, hypothyroid, migralepsy, TMJ and more. My content creation offers practical advice, tips and tricks for better daily living and resolutions to the challenges of living with chronic pain. I have had a medical journey with twist and turns and now educate others on navigating the minefield of the healthcare system. I serve on multiple pain advisory boards and coalitions. WEGO Awards 2012 Ms Congeniality, 2016 Lifetime Achievement, 2016 Best Team Performance. For more information on me check out www.barbyingle.com
Health communications is a league of its own. Let's face it: everyone is dealing with something and that is ripe for huge opportunities for health information and pharma firms. But without patient voices guiding the process, it can become a mine field for you. I'm experienced in consulting huge pharma companies (and small ones, as well) on how to communicate the sometimes simple and new social media messages, both branded and unbranded; creating health information websites; unique influencer marketing campaigns that stick; building social media strategies for educational institutions that feel one-on-one; advising nonprofits on how best to use free tools available to look like a million bucks. I've worked all the way up to The White House on their communication plans; and spoken relentlessly about building video and live interactive, fluid communication initiatives. Im Josh Robbins and after 5 years of working both sides of health conversations, I have a unique perspective. Want it?
In addition to being a "professional patient" living with MS and chronic pain, I have a varied career that includes writing, marketing, web design, education, and consulting. My perspective as a patient makes me particularly interested in helping businesses in the healthcare industry with their messaging and methods of reaching out to, interacting with, and supporting patients.
I can also make a mean veggie stir fry and talk about books for hours.
I work as a TV Station Manager for a local government access channel in NJ and assist with High School internships in TV Production & Advertising. I own and operate a freelance photography, video, and graphic design company (Film Reel Productions).
In my spare time, I support the Gaucher Disease community and advocate for patients and families with rare diseases/genetic disorders. I livestream weekly on ZubiaLive where reach a national audience on rare disease topics ("rare15") #rare15chat. I have experience with social media, crowdsourcing, and PR/advertising.
*Nominee for WEGO Health Award (2017):
"Healthcare Collaborator: Patient"
"Best Kept Secret"
*Patient Leader Hero*
*Technology Trainer (Talent/Producer) for TeacherCoach.com
*Vlogger/Host on ZubiaLive.net - [rare 15]
Sarah E. Kucharski is a consultant, public speaker and advocate fostering the patient voice in medicine through storytelling, social media and design thinking for innovation. Her special interests include narrative medicine, patient engagement, the patient experience, the doctor-patient relationship, the patient-caregiver relationship, chronic illness, end-of-life issues, clinical trials, health literacy, and social media's ability to connect for peer-to-peer support and medical education.
Her professional experience includes 17 years in public relations, news reporting, magazine writing, and editing for print and online publications. She has a B.A. in journalism, a M.A. in liberal studies, and a certificate from Columbia University's Narrative Medicine program.
Breck Gamel, is a patient advocate and blogger at http://initforbennett.com. She is a mother of three young children, including Bennett, her seven year old with cystic fibrosis. Breck advocates for patients alongside the Cystic Fibrosis Foundation. Breck is leader within the Cystic Fibrosis Learning Network and co-chairs the Cystic Fibrosis Foundation's Patient and Family Research Advisory Council.
Senior Transformation Specialist and Social Firebrand, Stotsky has represented companies including GE Healthcare, e-MDs, digiChart, BCBST and HMS/MEDHOST. She received GE Healthcare's CIS Award, led EMR adoption efforts, directed rollout of the 1st HIE in the state of TN, and was a member of HIMSS Standards and Interoperability Workgroup for Stage 1 Meaningful Use.
Stotsky is consistently named as one of “20 Health IT Influencers to Watch” by Healthcare IT Leaders. Most know her as @EMRAnswers, where she has been a social firebrand since 2009. A Social Ambassador at HIMSS global conference for the last four years, she is a frequent contributor to media pubs, & discussions as a respected HC strategist. Over 19,500 targeted followers,
An outspoken advocate, and caregiver, she speaks about Patient Safety and Care Coordination, She walks as patient #117 in The Walking Gallery of Healthcare. She Is on the HC Advisory Council at Fogo Data Centers, & current Board member S4PM.
I was diagnosed with Crohn's disease in July 2005 at age 21. After nearly 10 years in the TV business as a news anchor and reporter, I decided to share my story with the public in November 2014 when I left the anchor desk to pursue a career in Corporate Communications. I started a a blog in July 2016 (on the 11th anniversary of my diagnosis) entitled Lights, Camera, Crohns--An Unobstructed View. I share new content each Monday and aim to provide hope despite the unknowns of the disease. I became a mom in March 2017 and have shared the journey of my high risk pregnancy with my readers and online community. Between my television and PR background and my experience as a patient firsthand, I feel I have the skills necessary for speaking about the illness whether it's in front of a large crowd or on camera. I am confident in my knowledge and it does my heart good to offer hope to those who are struggling with their illness. I feel this is the perfect platform for me to help others.
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.
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.
Lisa Cypers Kamen, M.A. is an applied positive psychology coach, author,
documentary filmmaker, and radio show host specializing in sustainable wellbeing and lifestyle management. Additionally, she is an experienced spokesperson and brand ambassador for corporations including The Florida Department of Citrus and Katie K Activewear.
Lisa’s global consulting practice focuses on mission-driven addiction and trauma recovery supporting clients in balancing their minds, bodies and emotions resulting in greater overall wellbeing and the transformation of Post-Traumatic Stress (PTS) into Post-Traumatic Growth (PTG). Through her work, clients are empowered and supported to achieve increased self-mastery, optimal functioning and to reclaim their lives.
Lisa is a 'reformed clinically depressed person' who leads by example the virtues of a balanced mind, body, spirit, and soul. She is a health advocate for depression/mental health, addiction, healthy aging, optimal lifestyle, and more.
Bob is the Founder of the Alzheimer's Reading Room (ARR). Bob is a recognized expert in the Alzheimer's community,and listed as one of the top ten Alzheimer's influencer(s) on the Internet. The ARR operates for the benefit of society, contains over 5,000 articles, and has published daily since July, 2009.
Bob is a frequent lecturer, speaker, trainer and has appeared in person, or been interviewed on television and radio more than 100 times. Bob is an expert speaker on Alzheimer's caregiving.
Speaking and training engagements include: conferences, education societies, adult day services, and assisted living and memory care facilities, This includes: speaking and training (CEUs) for the Alzheimer's Association.
Patient sourcing for pharmaceutical clinical trials via sponsored programs and our proprietary email list (31,200). We have the targets and we get results.
The ARR has the largest opt-in only, curated, subscriber list of Alzheimer's community members in the world.
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.
Schizophrenic speaker and author of "Lil' Broken Star" a book for children with schizophrenia to help them learn management techniques.
Rachel Star Withers is a dynamic and can help people understand what people with mental disorders go through and assist those with disorders to learn management techniques to deal with the hallucinations, delusions, depression, suicidal urges...
Rachel makes videos on her youtube page documenting her schizophrenic for the past 11 years.
Sarah Hackley is most known for her work as a patient advocate spreading awareness of life with chronic migraine. She has been featured on numerous health blogs and is a regular contributor for Migraine.com, where she utilizes her personal experiences and educational background in neuropsychology to educate others on issues affecting the migraine community. She also is the author of two self-empowerment books, "Finding Happiness with Migraines: A Do It Yourself Guide" and "Preparing to Fly: Financial Freedom from Domestic Abuse." She also speaks, writes, and coaches patients on how to live fully and joyfully with chronic illness. Additional information can be found on her website: www.sarahhackley.com.
WEGO Health Staff
Whitney has been living with Epilepsy for 30+ years. She has used her first hand experience with the condition to help others. Through this blog, Whitney share's her life's journey, motivating others to take control of their epilepsy, build better doctor/patient relationships, and how to practice self-care. Whitney graduated from college with a BS in Information Systems Security. The knowledge gained in the IT field gives her the flexibility to self-host and manage her website, test and manage new health apps and more. Whitney's Epilepsy Advocacy work gives the opportunity to host webinars, appear at conferences for speaking engagements, work with companies to create blog content, crowdsourcing and has given her the opportunity to sit on a number of Advisory Boards and Panels. There is no limit to helping the Epilepsy the community.
In the early 90s I went from my healthcare journalism background to both print and online marketing. I have a special expertise in reaching America's aging population, their families and caregivers. For 10 years I've had a Boomers & Beyond section on my website. I write and plan for this growing arena working with Fortune 500, non-profits, hospitals and many others....helping them win awards, gain recognition. You'll see much more as you continue.