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.
Chef Trevis L. Gleason has been an award–winning culinarian, consultant, and instructor. A decorated US Coast Guard veteran and former USAID Ambassador to Ukraine.
Gleason has lived with Secondary-Progressive Multiple Sclerosis since diagnosis in 2001.
Twice named #1 online influencer on the topic of MS, he was the 2010 Media Industry News winner for Best Blog and his memoir, Chef Interrupted, won the Prestige Award of the International Jury at the World Cookbook Awards in 2016. In 2012, he was named the Jimmie Heuga “MS Can Do” person of the year.
He is an Ambassador for the National MS Society, MS Society of Ireland and MS Society of the UK. He speaks to groups, both large and small, about living life fully with or without a chronic illness.
His opinions are sought after by elected officials and non-profit leaders.
Gleason lives in Seattle, Washington and County Kerry, Ireland with his wife, Caryn, and their two Irish Soft-Coated Wheaten Terriers, Sadie and Maggie
My passion is to write, research and share information to empower others in the multiple sclerosis community. I write for MultipleSclerosis.net, MultipleSclerosis News Today, and my personal blog InsideMyStory.com. My interests in MS research led to my role as a merit reviewer with the Patient Centered Outcome Reach Institute, and the DoD. I am associated with the Accelerated Cure Project for MS and the PCORI funded Patient Powered Research Network (PPRN) and I serve as the Lead Patient Representative and Chair of the iConquerMS™ Governing Board.
I take pride in disseminating credible information to my communities whether it be in small in-person or one-on-one conversations, online within patient forums, through Facebook groups, or at national conference presentations. Knowledge is meant to be shared and I am fortunate to be afforded the opportunity to do so. I remain open to new ideas and opportunities for advocacy work and patient representation in all areas of the MS community
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.
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.
Over 16 years experience in patient advocacy, community engagement, marketing communications, media events and public affairs in the Multiple Sclerosis Community and biotechnology/pharmaceutical sector. Anchored a wide variety of patient relations campaigns, corporate events, community engagement initiatives, training sessions, media campaigns, fundraisers and public relations functions. Strong connections to patient communities, non-profits and healthcare industry partners.
No one understands the MS patient perspective like I do; their hopes, fears, decisions and vulnerabilities. My strength is helping develop relationships and collaborations with patients, patient advocacy organizations, healthcare providers and caregivers. I connect with the MS patient on all levels; through personal interaction, blogs, educational programs, social media and outreach.
Author "New Altitude", Beyond Tough Times To the Top of the World
I was dx with Multiple Sclerosis in 2007. I began writing about the good, the bad and the downright funny stuff that happens when living with a chronic illness in 2013. Since then, I have gained just under 12K followers and the blog was listed on Healthline's Top MS Blogs 2017. My profile was highlighted on Everyday Health and I have had the opportunity to be interviewed by Ian Jessep of Cannabis Health Radio.
Sharing my stories about living with MS and finding relief from chronic pain using cannabis has become my passion. Living with a disease that is so random and unpredictable can be extremely lonely. It can seem that there is no way that anyone can understand what you are going through because you can't even put it into words. My hope is that every once in a while, my words will ring true with someone else and they will think "holy crap, it's not just me...someone else gets it." Knowing you are not alone can be extremely powerful
Matt Cavallo, MPH is available for motivational speaking, freelance writing, education and consulting opportunities. Matt is a patient experience thought leader who has been a keynote speaker for healthcare events across the country. He was named among the Top 10 Social HealthMakers by WCG and his blog was selected as one of Healthline’s Top Health Blogs. His story of being diagnosed and overcoming the physical and emotional challenges associated with having a chronic disease can be read in his memoir, The Dog Story: A Journey into a New Life with Multiple Sclerosis. He managed the Neuroscience Clinics at Banner Good Samaritan. Other accomplishments include: Clinical educator and workflow consultant for Mediware on over 150 EMR implementations, Chief Customer Officer for Care Experience responsible for product development, website development, content creation and marketing, Advisory board member of patient centered initiatives including: iConquerMS, MyMSHealth, PTN Quality Impact.
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.
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.
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.
My name is Alissa and I am a LMHC (Licensed mental health counselor) as well as a Nutritionist and Personal Trainer. I help individuals with chronic illness to improve their lives and illness through movement and nutrition. I work with individuals on an individual basis to meet them where they are at in their journey to wellness.
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.
I have a vast array of skills in fitness, nutrition, motivational speaking, writing and multiple sclerosis. I am ready to assist in any fitness/wellness/motivational/educational programs for MS and other chronic conditions whether engaging live or in videos for group, one on one, or online. As a published author, I am available for writing assignments/projects for print or online publications. I am as well available for any speaking engagements nationwide.
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.
Navigating you through the complexities of health care, insurance, and social services.
Care Advocacy Services provides information, resources, guidance and support to clients of all ages who are managing some type of disability at home.
Private pay services offered on a sliding scale include short term care management, disability support, health care advocacy, insurance assistance, and concierge services.
Julie is a former health conferences consultant, and graduate of the Professional Program in Health Advocacy from the University of California, Berkeley.
Care management, health care advocacy, insurance assistance, and concierge services.
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 am a social/health psychology professor and have published more than 20 peer-reviewed scientific articles on health quality of life and stigma among people with Moebius syndrome, facial paralysis, multiple sclerosis, Parkinson's disease, mobility disability, and rare disease. I present internationally to academic and general audiences about disability awareness, disability as diversity, and rare disorders. I have served as an expert legal consultant regarding the social ramifications of facial paralysis. As a member of the Board of Directors of the Moebius Syndrome Foundation, the Massachusetts Department of Public Health Birth Defects Monitoring Program, and the International Consortium for Health Outcomes Measurement, I have engaged in patient advocacy, community engagement, event planning, and research evaluation. My expertise includes: patient advocacy, community engagement, grant writing, qualitative and quantitative research, health outcomes, and scientific publications.
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.
Ed Tobias writes the "MS Wire" column for the website www.multiplesclerosisnewstoday.com. He also consults on social media strategies for companies in the health care/medical/pharmaceutical fields. Tobias spent more than four decades in broadcast and on-line newsrooms as a manager, reporter and radio news anchor. Most of that time was with the Associated Press in Washington, DC.
Tobias served three terms on the Board of Directors of the Radio-Televison Digital News Association.
In addition to his journalistic credentials, before retiring Tobias became AP's first Manager of Business Continuity and Disaster Planning. He was tasked with helping AP bureaus around the world create their crisis plans. Tobias has has written and lectured on the use of social media during a crisis.