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.
Kathleen, 33, is an author with Crohn’s Disease and various other chronic illnesses living in Scotland. Since diagnosis she has worked tirelessly to raise awareness of inflammatory bowel disease and help others come to terms with their condition. Kathleen was diagnosed with Arthritis in 2008 and Crohn’s in 2009. She has since endured countless hospitalisations, tested all medications old and new, undergone endless tests and flare-ups. Her blog, 'Crohnological Order' covers everything from relationships, mental illness and all with buckets of honestly and humour. Kathleen first book was published in 2016 and has been a huge step forward in opening up the conversation around IBD across the globe. She is a passionate health advocate and writer, constantly striving to show that there is more to life than your illness.
Sunnie is a healthcare industry professional with expertise in launching products and building brands. She is passionate about leveraging technology to improve access to care, democratize information, and maximize the care experience for everyone. She is a registered dietitian with a Master’s degree in Human Nutrition and Foods.
Sunnie’s unique experience in creating, launching, and building products in health/ healthcare has resulted in opportunities to serve her community and humanity in roles such as: The US Department of Health and Human Services (HHS) Health Data Affiliate Program; Grant Review Chair for the Discovery Infrastructure for Clinical Health IT Apps Cooperative Agreement, Department of Health and Human Services, Office of the National Coordinator; and Subject matter expert on health innovation for the Academy of Nutrition and Dietetics 2016 National House of Delegates
Engaging healthcare employees in re-imagining the patient experience.
Help Me Health transforms how healthcare thinks about and delivers patient experiences to achieve better outcomes and a better bottom line.
* Impactful and memorable keynote speeches, customized to key themes
* Buzz workshops for conferences designed for attendee interaction
* Training sessions for all employees to create commitment not only compliance with redesigning processes for improved patient experience
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.
I currently work as fashion photographer for a consignment shop in Broomall, PA and volunteer my time as Director of Multimedia for Girls With Guts which involves photography, videography and social media management.
In 2014 I medically retired from my position as Executive Manager, Suncorp Bank, a role I thoroughly enjoyed. However my body decided to work against me & I was diagnosed with Rheumatoid Arthritis & and a complex idiopathic rare disease affecting my bones & other organs. Life goes on & I am finding a new normal, grateful that I had a successful career in Financial Services for 30 years before illness struck.
Early retirement has re-ignited my love of writing & on my good days I now blog about my journey through the maze of living with an unpredictable complex disease. I also founded an International Chronic Illness Facebook Support Group in January 2017. Medical Musings with Friends has 1400 members & grows daily. We provide a safe place to share the good & bad days of living with complex disease with others who provide genuIne support & understanding.
I am also an ongoing contributor with The Mighty.
I am a freelance journalist specializing in researching and writing about health related issues. My interest in this field began when I was diagnosed with a little known chronic blood disorder (ITP) and had to do the research to find out exactly what I had. I am also a full-time caregiver for my disabled husband and have interviewed health professionals and other caregivers to succeed at this task.
I have used my skill at searching out answers to write articles for newspapers, blogs, websites, etc on various health related topics.
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.
As a patient , myself, I believe my Expertise involves a wide range. I am the founder of a blog called Living Life IBD Style, I share with others my story and knowledge of both Crohn's and Ulcerative Colitis. I also touch on Anemia, Dehydration, Ostomies, Anxiety and Depression and soon I want to write about fitness and nutrition as well, from my point of view and research. Everyone's body is different when it come to how it handles any situation. I also work in health care, currently I am a Certified Nurses Assistant and work within a nursing and rehabilitation center. I am working towards becoming an Registered Nurse. I help out within the CCFA local chapter here in NC, I attend conferences to learn new information on IBD, Education programs as well as our walks we plan. I love to research and learn as much as I can about my illness plus others and am very passionate and dedicated.
Inspired by my Crohn's disease and my ileostomy bag, I created Let's Talk IBD, an online YouTube community discussing the difficulties and triumphs with chronic illness.
Adjusting to life well with an ostomy, I went on to become a registered nurse. I currently work as a pediatric GI nurse at one of the nation's top pediatric hospitals.
I have the ability to create educational and informative videos, blog posts, and graphics as well as consult for companies interested in patient perspective of chronic illness.
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 am a life sciences and public health research professional living with Crohn's Disease since I was a teenager. I am experienced in the field of Inflammatory Bowel Disease and immune mediated disease research, as well as novel drug discovery and development. I have a keen knowledge of the pros and cons of the various treatments for IBD and new therapeutics in development. My pride and passion is my ability to discuss and educate on key IBD issues and health science to both layman and experts. I thrive in the presentation setting and cherish the opportunity have interpersonal engagements with patients and professionals in the fight with IBD and autoimmunity.
Translating my personal experience with 20 years of chronic illness to help others. Specializing in writing, strategy, product/process design, user experience, support group management, social media.
I have worked with many different types of companies doing professional consulting work using my influence as an advocate to guide companies on how best to construct their information/product towards a specific patient population. I am a very seasonsed presenter on patient related and scientific topics as well. I am available for consulting, speaking, advisory boards. I also am a Graduate student in Biomedical Research and I have expertise in health & medical writing and scientific consulting. I have written for health and science web sites about many different topics including Inflammatory Bowel Disease, Clinical Trials and Scientific Research.. I have consulted on advisory boards as a scientific consultant as well using my knowledge of science and patient advocacy to help companies.
I have been a patient advocate for 5+ years, and founded Lady of Lyme to be a place of information, community, and advice. I have met and consulted with patients who are both newly diagnosed and everywhere in between. I can help connect you to resources, provide you with helpful checklists, and guide you in other ways as needed.
I work in autoimmune patient advocacy, primarily with Inflammatory Bowel Disease (IBD) and ostomies. I'm available to work on different social media platforms and on many different levels.
My passion is running an organization that connects children living with chronic health conditions with an empowered community of adult mentors who are living with the same health condition. My company is called MedMentor of Greater Cincinnati. I also work full-time in Quality Improvement Research at Cincinnati Children's Hospital. I have 7 years of project management experience in addition to the countless hours I've spent fundraising and advocating for families impacted by Inflammatory Bowel Disease. I have certificates in community organizing from Harvard Kennedy School (online) and project management from Xavier University's Leadership Center (Cincinnati, Ohio). I enjoy relationship management, program development, and strategic planning aspects of my job the most.
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.