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 am seasoned professional with expertise in integrating health IT systems through innovative, cost-effective solutions that improve interoperability, scalability and performance. I offer a proven methodology and roadmap to accelerate the adoption of digital solutions that enhance and extend healthcare delivery and promote financial sustainability of healthcare systems. I have helped healthcare organizations transform and redesign healthcare delivery through better use of health IT, data and analytics. As a leukemia survivor, I am dedicated to making healthcare more patient-centered, compassionate, accessible, effective and efficient. I am passionate about re-imaging and re-inventing healthcare delivery models for best patient experiences. I strive to be a visionary, proactive, results-oriented professional who can make informed decisions, empower others, build consensus and foster a collaborative teaming environment to implement innovative solutions that deliver measurable results.
I have been an advocate with a number of different organizations since 2013. During that time I have contributed to dozens of publications about my life with chronic illnesses. I have received a letter of recommendation from one of the organizations that I work for and have also been described as one of the top 5 volunteers in the organization. I am very active on social media and currently have a blog that I am working on. I write stories and contribute them to a webpage along with others who suffer from psoriatic disease. I have attended: 2015 Arthritis Foundation Advocacy Summit, FDA Patient Focus Drug Development meeting, HealtheVoices Conference, National Psoriasis Foundation Capitol Hill Fly-In, NPF Volunteer Conference. I have contributed to: Women's Health, HealthCentral, HealthMonitor, HealthGrades, Psoriasis Advance,etc
I have been diagnosed, and am being treated for, psoriasis, psoriatic arthritis, endometriosis, chronic fatigue syndrome, fibromyalgia, and chronic pain.
I am a public health professional with analytics experience working for hospital systems and health insurance companies. I am very familiar with how these entities determine and process coverage, coding and payment of services. I'm offering my expertise to help patients navigate the complex healthcare system as a virtual health companion. I will produce a detailed guide on coverage, payment and services patients can expect for their healthcare journey, and suggest the best pathways to mitigate headaches and stress!
I am a volunteer mentor and coach for the National Psoriasis Foundation, providing guidance for those who are newly diagnosed. I have lived with psoriasis for more than 15 years. I started my blog, Homegrown Houston, as a platform for fashion, marriage and motherhood while offering a style resource for those living with psoriasis. I live by the motto, “I don't let psoriasis define who I am. I define who I am and how I live my life.”
I write and speak about mental illness, chronic pain, and women's health issues. I launched my website, Fashionably ill ®, in 2012 and am a contributor to The Huffington Post and Ask a Bipolar. I frequently speak at conferences, universities, and other events - my 2015 TEDx Talk, "How to Get Stuff Done When You Are Depressed," recently surpassed 250,000 views. I have a book on the same subject as my TEDx Talk coming out. I used to work in mental health nonprofit. In my free time, I give makeovers to women with illnesses including cancer, MS, lupus, among others. My skills include: writing copy for campaigns (awareness or policy campaigns), story telling, and public speaking. NBC News did an extensive profile on my advocacy work. I live well with bipolar 2, myasthenia gravis, polycystic ovarian syndrome, asthma, and psoriasis. I graduated from Northwestern University with a B.S. in Communications & a Second Major in Political Science.
I have expertise in writing informative and inspiring articles about living with chronic illnesses. In addition, I have a background in English education which makes my editing and proofreading skills sharp. I have been blogging for 5+ years and work very hard to advocate for PsA awareness.
I am a multi-media relations professional, award winning writer, and a diligent community advocate. After graduating with a Bachelor’s degree in Liberal Arts in 2010, I began my career in Broadcasting; however, over the years I came to realize my true passion is in serving others through advocacy. I am attending Georgia State University in order to complete additional coursework in the Sciences. After completion, I will be pursuing a Master of Physician Assistant Studies with a focus in Dermatology.
Currently I am a health media entrepreneur. I provide services for a variety of clients which include social media management, article writing, patient recruitment, advocacy, patient engagement, public speaking, consulting services, and much more. I am currently looking for additional temporary or long-term freelance work in the above areas.
I am a passionate advocate and activist for people living with musculoskeletal conditions, working with a number of national and international organisations as a guest speaker, freelance consultant and adviser. I am also a doctoral researcher in child and family health in the United Kingdom, where my research interests include self-management in children with long-term conditions and public involvement in research. I hold a first class BSc (Hons) degree in Biomedical Sciences with Industrial/Professional Experience.
I am available to speak at events as an empowered patient and early career researcher. I am also available in a consultant capacity to shape research proposals, study designs, plans for public involvement and for engaging members of the public in science and medicine. I am also experienced in using social media, having presented lectures and facilitated workshops on using social media for health purposes.
I offer support to those suffering from chronic digestive illness through my website http://nomorebellyaches.com as well as social media.
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.
Lynda Cheldelin Fell is an international bestselling author of over 25 books on grief, loss, healing and hope. She has earned four national literary awards, garnered standing ovations for her inspirational speeches, interviewed noteworthy newsmakers including Martin Luther King's daughter, and her articles have been published in Huffington Post, New York Daily News, Women's Health magazine and more. She is CEO of AlyBlue Media, creator of the award-winning anthology book series Grief Diaries and Real Life Diaries, creator of Grief in the Workplace curriculum, and founder of Grief Masterminds, a cutting-edge think tank for field leaders who are dedicated to large scale change that impact cultural thinking, influence and support of the bereaved at all levels of society. Learn more at www.LyndaFell.com.
Experienced writer and speaker passionate about living well with psoriasis, psoriatic arthritis & Ehlers-Danlos Hypermobility Syndrome.
I make awareness graphics and have a United Advocacy Australia Facebook Page to raise awareness of various Diseases. If it raises awareness then that is good for patients living with these conditions.
I use multiple social Media channels Facebook,Pinterest,Twitter,Tumblr,
LinkedIn,Instagram and Google+. I believe in working together to make a difference and volunteer with the International Foundation for Autoimmune Arthritis and The International Pain Foundation I am also a member of the #CureArthritis Team for the Arthritis National Research Foundation. I am an ambassador for the Blue Ribbon Project as well. I have contributed in the IPain Living Magazine from the International Pain Foundation.
I am also a writer and have just recently finished writing for Real Life Diaries Living With Rheumatic Disease due for Release during 2017. I am a Passionate Chronic Illness Advocate and together we can all make a difference by uniting in the fight. Eg #UniteInthefightagainstArthritis.
As a certified caregiving consultant and a certified yoga instructor, I offer family caregivers: (1) resources; (2) research, and (3) relaxation. It's my "Three R's for Restoring Family Careging Sanity" Look, I know what it's like. The exhaustion. The overwhelm. The fear of not quite knowing you're doing yet needing to do it anyway because if not you then who? I was a family caregiver . . . with my parents . . . in the wake of Hurricane Sandy.
I am a Wisconsin-based writer living with multiple physical and mental chronic illnesses. My passion is to help patients and organizations alike learn more about illnesses, stigmas attached to them, and how to improve quality of life for all. I have written for and worked with a number of organizations from Creaky Joints to Self Care Catalysts and Healthline to Achieve Clinical. Not Standing Still's Disease helps to display issues related to my personal health. Chronic Sex focuses on how illness and disability affect little-discussed things like relationships and sexuality. ORCHIDS - the Org for Research on CHronic Illness, Disability, and Sexuality - focuses on how to improve research around sex and illness/disability.
I would like to offer services including but not limited to:
Focus group work
Social Media promotion
Worked closely with other advocates and patients through various social media outlets and my own website. Mastered community engagement, led support groups/patient chats, presented at several conferences, and participated in a plethora of paid writing opportunities.
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.
Lilly's reason for being was ignited in 2011 when she was diagnosed with two autoimmune conditions - Crohn's disease and Psoriatic Arthritis. From this time forward, she has dedicated her personal and professional life to patient advocacy. In addition to running a blog and social media dedicated to advocacy and the patient experience, she launched the 50 Cents for 50 Million campaign to raise awareness and funds for patients battling autoimmune diseases. She now serves on the board of the American Autoimmune Related Diseases Association (AARDA) and is the Head of Patient Advocacy at Clara Health, a startup making it easier for patients to get access to breakthrough treatments and clinical trials.
Lilly regularly consults with healthcare companies to provide insight on the patient experience and is a powerful motivational speaker and writer that leaves her audience inspired and ready to make an impact.