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.
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
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.
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.
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.
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.
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.
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 for outstanding achievement in Sales directed the the rollout of the 1st HIE in the state of Tennessee, and was a working 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 national conference for the last three years, she is a frequent contributor to HealthcareIT News and,HIMSS Media,,
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 was recently named to the Healthcare Advisory Council at Fogo Data Centers. Volunteer e-Patient at s4PM.
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.
My experience spans nearly 20 years as a healthcare marketing professional. My MS diagnosis in 2014 has widened my understanding and helped me see how and why the patient perspective should be leveraged to affect marketing in healthcare, everything from fitness trackers to pharmaceuticals. I am willing to consider any request but I feel my most meaningful contributions would include elements of the following:
- Voice of a career-minded MS patient balancing parenthood while trying not to stumble over the sidewalk crack. I fit the healthcare target demographics - employed (and insured) female, early 40s with young children. Using my unique marketing insight, I can help create compelling messages that resonate with the intended audience.
-My MS workarounds - From fashionable footwear to blow drying my hair to managing the most out of my health plan, hacks healthy people would never imagine.
- Healthcare Marketing Today: From print ads to storytelling. A new art is emerging.
I was diagnosed with MS in 2008. Since then I have committed myself to being a advocate for others. I have participated in several conferences as a patient expert and am active in the online community.
Additionally, professionally I am a licensed independent clinical social worker and have worked as a medical social worker advocating for patients and families for many years. I also provide therapy in my private practice.
I am a freelance health and science writer for hire. I help businesses get results with quality content. I create compelling content that has a proven track record of driving online engagement.
I can help you reach the right audience, create better content, raise brand awareness and make more money. I can translate complex health and science topics into plain language.
I have a Bachelor of Science degree from Butler University and graduated summa cum laude with a double major in biology and chemistry. I have extensive online writing experience. I have published on Yahoo! News, CNN iReport, Lifescript.com, The Huffington Post and many other publications.
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.
I'm a Blogger and multimedia artist with a focus on my patient experience, the experiences of the chronic illness community, as well as the realities of health care access and provision in the U.S. (from the patient perspective). I use social media and my artwork (video, sculpture, photography, and digital art) to share my experience with multiple sclerosis and all that comes with it, to share tools for those living with chronic illness, and to promoting the importance of patient voices in all aspects of care, product development, medical trials, policy development and health discourse as a whole . I have technical experience with graphic design, all aspects of explainer video production, and Blog at Chronicallysomething.com, on tumblr, and participate in "Voices of MS" on twitter.
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.
I am a patient advocate using my experience living with multiple sclerosis along with my degree in media studies and my creative mind to bring together a community and share the voices of people living with this chronic illness. I have worked in the customer service industry, where I was able to learn how to better serve people, and been self-employed where I was able to do more creative things such as design artwork for a small business and create crafts to sell on my own. I am now able to bring these different experiences together, along with my perspective as a patient and member of the health community, and utilize them to bring a fresh, creative approach to my work as a patient advocate. Additionally, my hobbies include creative writing, drawing, and enjoying film and television.
I am an award-winning freelance writer for my blog, AnEmpoweredSpirit.com, that focuses on living a quality life in midlife and despite disability. I am writer for other health-related websites including MultipleSclerosis.net and Multiple Sclerosis News Today. I am also the official blogger for the Consortium of Multiple Sclerosis Centers.
My expertise lies in my 30 years of living and managing an unpredictable and incurable autoimmune disease.
I received my BA in English/Business from Boston College. I also received a certificate in Patient Advocacy from the University of Miami that allows me to pay it forward to others who find themselves on the tricky journey of disease and disability.
As a freelance writer I've successfully married my love of the written word with my passion of helping others. My work not only appears on the sites listed above but also on other fine publications. I'm also a regular contributor to The Huffington Post and Mango Health.
Lisa Emrich is a leading patient advocate who uses her experience living with multiple sclerosis and rheumatoid arthritis to educate, empower, and inspire people living with chronic conditions. Author of the award-winning blog Brass and Ivory: Life with MS and RA, Lisa is writer, subject matter expert, and community moderator for Health Union and Remedy Health Media. An experienced speaker and consultant, Lisa gives voice to the patient at conferences and works with health companies to improve services and messaging. She also co-leads the Engagement Committee for iConquerMS™, the world’s largest MS patient-powered research network, and serves as a merit reviewer for research proposals submitted to PCORI, the Patient-Centered Outcomes Research Institute. Lisa and her husband enjoy cycling together on the rails-to-trails paths in Virginia.
An action catalyst empowering people traveling together toward best health (patients, caregivers, and clinicians) Danny wears many hats in healthcare: pt with MS, caregiver, nurse, informaticist and QI leader. His current work focuses on communication at transitions of care, person-centered health planning, informed decision-making, and technology supporting solutions created by and for people at the center. He advises entrepreneurs about strategy, infrastructure, and user-friendly workflows and technology. He teaches and coaches front-line managers. He serves as a patient/caregiver stakeholder representative on Technical Expert Panels for Shared Decision Support and PCORnet and sits on the Steering Committee for the AHRQ-supported Clinical Decision Support Learning Network. He reviews PCORI research funding applications and serves as co-chair of PCORI’s Communication and Dissemination Advisory Panel. He blogs weekly at www.health-hats.com.
Graduated in Business Administration with specialization in Creativity and Entrepreneurship, I have worked in the education, retail, trade marketing, communication and, since 2011, in the third sector.
At AME, I am responsible for developing and raising funds for new projects, from idealization, implementation and execution (follow-up).