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Top Multiple Sclerosis Patient Experts

Kayla

Writer + Marketer + Web Designer + Business Consultant + Advocate (Living with MS)

Kayla
Autoimmune Diseases
Chronic Illness
Depression
Endometriosis
Healthy Living
Multiple Sclerosis
Pain (Chronic Pain, Joint Pain, Back Pain)
Seasonal Allergy
Women's Health
Blogger
Business Development
Clinical Research
Consumer Engagement
Consumer Insights
Copywriter
Crowdsourcing
Digital Marketing
Editor
Health Data Tracking
Influencer Marketing
Marketing
Mobile App Design
Online Moderation
Peer Support
Product & App Testing
Product Development
Project Management
Proofreader
Reporter
Social Media
Social Networking
Strategy
Usability Testing
UX/User Design
15 More 15 Less
Fergus Falls, MN
available 21-30 hours/week

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.

Amy

Healthcare Marketer Living with MS

Amy
Multiple Sclerosis
Digital Marketing
Event Planner
Health Data Tracking
Marketing
Program Development
Project Management
Strategy
Canton, GA
available less than 10 hours/week

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.

Jodi

Patient Health Advocate

Jodi
Multiple Sclerosis
Melrose, MA
available less than 10 hours/week

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.

Nicole

Disabled Artist, Advocate, Blogger with background in video, graphics, public policy, and advocacy through social media

Nicole
Autoimmune Diseases
Chronic Illness
Fibromyalgia
Migraine
Multiple Sclerosis
Postural Orthostatic Tachycardia Syndrome
Blogger
Online Moderation
Other
Peer Support
Product & App Testing
Social Media
Social Networking
Usability Testing
Somerville, MA
available 21-30 hours/week

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.

Lisa

Patient Advocate, Writer, Community Expert

Lisa
Multiple Sclerosis
Rheumatoid Arthritis
Blogger
Consumer Engagement
Consumer Insights
Copywriter
Online Moderation
Proofreader
Social Media
Usability Testing
Falls Church, VA
available less than 10 hours/week

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.

Cathy

Freelance Writer, Health Advocate

Cathy
Multiple Sclerosis
Basking Ridge, NJ
available as required

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.

Danny

Founder Health Hats

Danny
Addiction
Alternative Medicine
Autoimmune Diseases
Children's Health
Developmental Disabilities
Health Public Policy
Men's Health
Mental Health
Multiple Sclerosis
Pain (Chronic Pain, Joint Pain, Back Pain)
Blogger
Business Development
Clinical Research
Consumer Engagement
Editor
Executive Coach
Mobile App Development
Peer Support
Project Management
Strategy
Usability Testing
1 More 1 Less
Arlington, MA
available 10-20 hours/week

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.

Damon

Patient Advocate & Founder of the "Voices of MS" community

Damon
Multiple Sclerosis
Blogger
Consumer Engagement
Consumer Insights
Online Moderation
Product & App Testing
Social Media
Social Networking
Usability Testing
Pomona, CA
available 40+ hours/week

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.

Gustavo

Founder of AME

Gustavo
Multiple Sclerosis
Business Development
Consumer Engagement
Consumer Insights
Crowdsourcing
Digital Marketing
Event Planner
Finance
Influencer Marketing
Marketing
Public Relations
Social Media
Social Networking
Strategy
Video
4 More 4 Less
available 10-20 hours/week

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).

Ken

Vice President, International Pain Foundation & Caregiver

Ken
Cancer
Caregiving
Celiac Disease
Chronic Illness
Complex Regional Pain Syndrome
Crohn's Disease
Depression
Diabetes
Disabilities
Dystonia
Endometriosis
Epilepsy
Eye Health/Diseases
Fibromyalgia
Fitness
Food Allergy
Gastrointestinal Diseases
Health Public Policy
Healthy Living
Heart Disease
Hemophilia
HIV/AIDS
Learning Disorders
Lupus
Men's Health
Migraine
Multiple Sclerosis
Muscular Dystrophy
Neuromuscular Disorders
Nutrition
Oral Health
Osteoporosis
Other
Pain (Chronic Pain, Joint Pain, Back Pain)
Post-Traumatic Stress Disorder
Psoriasis
Reflex Sympathetic Dystrophy
Rheumatoid Arthritis
Seizures
Sexual Health
Sjogren's Syndrome
Skin Cancer
Skin Health/Diseases
Sleep and Sleep Disorders
Thyroid Cancer
Thyroid Diseases
Ulcerative Colitis
Women's Health
38 More 38 Less
Business Development
Clinical Research
Consumer Engagement
Consumer Insights
Crowdsourcing
Digital Marketing
Editor
Event Planner
Finance
Health Data Tracking
Influencer Marketing
Marketing
Mobile App Design
Mobile App Development
Online Moderation
Operations
Other
Peer Support
Product & App Testing
Product Development
Program Development
Project Management
Public Relations
Reporter
Social Media
Social Networking
Strategy
17 More 17 Less
San Tan Valley, AZ
available less than 10 hours/week

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.

Alissa

Founder, LissMS Coaching

Alissa
Chronic Illness
Multiple Sclerosis
Rheumatoid Arthritis
Blogger
Social Media
Social Networking
Marlborough, MA
available as required

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.

Trevis L

Chef by training, Food Scientist by education, Writer by passion, Advocate for people with disabilities by necessity.

Trevis L
Autoimmune Diseases
Multiple Sclerosis
Blogger
Consumer Insights
Copywriter
Digital Marketing
Online Moderation
Peer Support
Public Relations
Reporter
Social Media
Social Networking
Usability Testing
1 More 1 Less
Seattle, WA
available less than 10 hours/week

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

Tracy

Rare Disease EPatient Experienced in Managed Healthcare, Rare Diseases and Clinical Research Advisor.

Tracy
Acne
Acromegaly
Addison's Disease
ADHD (Attention Deficit/Hyperactivity Disorder)
Aging/Senior Health
ALS (Amyotrophic Lateral Sclerosis)
Alternative Medicine
Alzheimer's Disease
Anemia
Aneurysms
Aphasia
Arrhythmia
Arthritis
Asthma
Atrial Fibrillation
Autism Spectrum Disorders
Autoimmune Diseases
Beta Thallasemia
Birth Defects
Blood Disorders
Bone Diseases
Brain Health
Breast Cancer
Cancer
Carcinoid Syndrome
Caregiving
Celiac Disease
Cerebral Palsy
Chronic Illness
Clinical Trials
Colorectal (Colon) Cancer
Complex Regional Pain Syndrome
COPD (Chronic Obstructive Pulmonary Disease)
Crohn's Disease
Cushing's Disease
Cystic Fibrosis
Dementia
Diabetes
Disabilities
Duchenne Muscular Dystrophy
Dystonia
Ehlers Danlos Syndrome
Epilepsy
Eye Health/Diseases
Fibromyalgia
Fitness
Food Allergy
Gastrointestinal Diseases
Gaucher's Disease
GIST
Health Public Policy
Healthy Living
Hearing Disorders and Deafness
Heart Disease
Heart Health
Hemophilia
Hepatitis
HIV/AIDS
Irritable Bowel Syndrome
Liver Diseases
Lupus
Lyme Disease
Migraine
Multiple Sclerosis
Muscular Dystrophy
Myelo Dysplastic Syndrome
Neuromuscular Disorders
Nutrition
Oral Health
Organ Transplantation
Osteoporosis
Pain (Chronic Pain, Joint Pain, Back Pain)
Pancreatic Neuroendocrine Tumors
Parenting and Family Health
Parkinson's Disease
Polycystic Ovarian Syndrome
Post-Traumatic Stress Disorder
Postural Orthostatic Tachycardia Syndrome
Primary Biliary Cholangitis
Psoriasis
Psoriatic Arthritis
Pulmonary Fibrosis
Rare Diseases
Reflex Sympathetic Dystrophy
Restless Legs Syndrome
Rheumatoid Arthritis
Seizures
Severe Allergy
Sexual Health
Sickle Cell Disease
Sjogren's Syndrome
Skin Health/Diseases
Sleep and Sleep Disorders
Stroke
Thyroid Diseases
Tuberous Sclerosis Complex
Ulcerative Colitis
Wegener's Granulomatosis
Women's Health
89 More 89 Less
Blogger
Business Development
Clinical Research
Consumer Engagement
Consumer Insights
Health Data Tracking
Human Resources
Mobile App Development
Online Moderation
Peer Support
Program Development
Project Management
Social Media
Social Networking
Strategy
Usability Testing
6 More 6 Less
Chesterfield, VA
available 31-40 hours/week

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.


Fabio

Influencer-Powered Clinical Trial Recruitment Expert

Fabio
ADHD (Attention Deficit/Hyperactivity Disorder)
Aging/Senior Health
Alzheimer's Disease
Anxiety
Aphasia
Arthritis
Asthma
Atrial Fibrillation
Autoimmune Diseases
Bipolar Disorder
Blood Disorders
Bone Cancer
Brain Cancer
Brain Health
Breast Cancer
Cancer
Caregiving
Cervical Cancer
Cholesterol
Chronic Illness
Clinical Trials
Colorectal (Colon) Cancer
Crohn's Disease
Cushing's Disease
Cystic Fibrosis
Dementia
Depression
Diabetes
Diabetes - Type 1
Diabetes - Type 2
Duchenne Muscular Dystrophy
Epilepsy
Fibromyalgia
Gastrointestinal Diseases
Gaucher's Disease
GIST
Heart Disease
Heart Health
Hepatitis C
HIV/AIDS
IBD (Inflammatory Bowel Disease)
Irritable Bowel Syndrome
Liver Cancer
Lung Cancer
Lupus
Lymphoma
Melanoma
Men's Health
Menopause
Mental Health
Migraine
Multiple Sclerosis
Myeloma
Neuromuscular Disorders
Non-Hodgkin's Lymphoma
Ovarian Cancer
Pain (Chronic Pain, Joint Pain, Back Pain)
Pancreatic Neuroendocrine Tumors
Parenting and Family Health
Parkinson's Disease
Pregnancy
Prostate Cancer
Psoriasis
Psoriatic Arthritis
Rare Diseases
Rheumatoid Arthritis
Schizophrenia
Seasonal Allergy
Seizures
Sexual Health
Sickle Cell Disease
Sleep and Sleep Disorders
Stroke
Ulcerative Colitis
Women's Health
65 More 65 Less
Costa Mesa, CA
available 40+ hours/week

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.

Matthew

Speaker | Author | Educator

Matthew
Multiple Sclerosis
Blogger
Business Development
Consumer Engagement
Editor
Executive Coach
Influencer Marketing
Marketing
Online Moderation
Product Development
Social Media
Social Networking
Strategy
UX/User Design
3 More 3 Less
Chandler, AZ
available as required

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.

Julie

Founder, Care Advocacy Services

Julie
Alternative Medicine
Chronic Illness
Disabilities
Fitness
Healthy Living
Multiple Sclerosis
Neuromuscular Disorders
Nutrition
Consumer Engagement
available 21-30 hours/week

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.

Wendy

Patient Advocacy- Founder "Climb On!" Foundation, Consultant, Keynote and Motivational Speaker, Author

Wendy
Multiple Sclerosis
Blogger
Consumer Engagement
Consumer Insights
Influencer Marketing
Other
Peer Support
Program Development
Public Relations
Social Media
Social Networking
Manchester-by-the-Sea, MA
available as required

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

Kathleen

Psychology professor who studies and has rare disease / Health quality of life researcher / International speaker

Kathleen
Anxiety
Birth Control
Birth Defects
Chronic Illness
Depression
Disabilities
Eye Health/Diseases
Health Public Policy
Irritable Bowel Syndrome
Multiple Sclerosis
Neuromuscular Disorders
Parkinson's Disease
Plastic Surgery and Reconstruction
Rare Diseases
4 More 4 Less
Clinical Research
Consumer Engagement
Editor
Health Data Tracking
Peer Support
Project Management
Social Media
Social Networking
Corvallis, OR
available 10-20 hours/week

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.

David

Founder MS Fitness Challenge

David
Multiple Sclerosis
Blogger
Business Development
Copywriter
Influencer Marketing
Marketing
Social Media
Murrieta, CA
available 21-30 hours/week

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.

Laura

Lead Patient Rep- Multiple Sclerosis Research Network

Laura
Aging/Senior Health
Alternative Medicine
Heart Disease
Multiple Sclerosis
Women's Health
Consumer Engagement
Copywriter
Crowdsourcing
Digital Marketing
Marketing
Online Moderation
Proofreader
Public Relations
Reporter
Social Media
Social Networking
1 More 1 Less
available as required

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


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