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
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.
I work as a TV Station Manager for a local government access channel in NJ and assist with High School internships in TV Production & Advertising. I own and operate a freelance photography, video, and graphic design company (Film Reel Productions).
In my spare time, I support the Gaucher Disease community and advocate for patients and families with rare diseases/genetic disorders. I livestream weekly on ZubiaLive where reach a national audience on rare disease topics ("rare15") #rare15chat. I have experience with social media, crowdsourcing, and PR/advertising.
*Nominee for WEGO Health Award (2017):
"Healthcare Collaborator: Patient"
"Best Kept Secret"
*Patient Leader Hero*
*Technology Trainer (Talent/Producer) for TeacherCoach.com
*Vlogger/Host on ZubiaLive.net - [rare 15]
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 2012, I decided to utilize my expertise in process management along with my advocacy for Mental Health Issues from a patient's point of view. I have been a Keynote Speaker on subjects such as depression, borderline personality disorder, addiction and post-traumatic stress disorder. In 2013, I wrote a motivational piece titled "Arisen Strength". The piece took a journey from despair to strength, and then from strength to purpose in helping others. In 2014, I created a motivational podcast called "Arisen Strength" aimed to help others be more than the challenges they face. In 2015. I developed an internet radio network to showcase awareness and support for all types of challenges.
I can provide, but not limited to:
> Radio Advertising (Audio and Digital)
> A platform to bring awareness to a cause, condition or brand
> Professional interviews
> Professional audio and video editing
> Professional voice-over
> Audio Narration (Audiobooks Podcast, Educational Materials)
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.
A dedicated licensed social worker in New York City and active advocate with the Arthritis Foundation with a passion for sharing her story as a patient living with Juvenile Idiopathic/Rheumatoid Arthritis since a toddler and being a voice for children and young people struggling with navigating their lives and medical care with rheumatoid arthritis including addressing the shortage of pediatric rheumatologists across the nation. She has advocated on Capital Hill and her state of New York's capital as a voice for patients. Additionally, a certified yoga instructor and a recent graduate of the Yoga for Arthritis teacher training program that she is bringing to her current clients and developing an accessible program with her current employer.
I am available for speaking engagements, patient panels, writing, fundraising, advocacy, blogging, and much more.
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.
A scientist by training, and entrepreneur by operation. A results-driven product and customer experience specialist, with a fiercely passionate focus on developing human-centered, engaging and meaningful solutions for the people who need them use them.
Draws on a rich background in product strategy, biology, research, and human and organization behavior, to lead teams that turn ideas into something valuable, tangible and meaningful.
Breast cancer survivor, life-long competitive athlete, and constant learner.
"Why-based" focused leadership, with the patience and curiosity to learn the important stuff and the urge to execute with discipline.
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 suffered with autoimmune illness, specifically rheumatoid arthritis, for over thirty years now. Since the age of nine, I have fought the illness and have both won and lost many battles. Joint replacements, deathly infections, and even a heart attack - I've seen and done it all. In this time, I have also written an autobiography, created a very successful blog, and I star in a short monthly podcast. I have become a valuable member of the online autoimmune and "spoon" community, and I am acquainted with not only patients but many doctors, professionals, and organizations as well. If you are looking for rheumatoid arthritis and/or autoimmune illness expertise, look no further.
I'm an Patient Advocate and a Patient Expert. I work with patients. I volunteer to help patients. I represent patients through advocacy work both locally and on Capital Hill. I'm the Founder and CEO of a patient organization. Most importantly I am a patient.
I represent patientsgive the patient perspective and ensure that the patient voice is taken into consideration during the entire product development process. I participate in patient required Consumer Reviews, Patient roundtables, advisory boards. I'm
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 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.
In the year before being diagnosed with rheumatoid arthritis in 2010, I lived in such severe pain, I still cannot properly find words to describe it. I wanted to die. One morning in February of 2010, I awoke and I could not lift my body, arms, and I was pale and lifeless. After an emergency visit to my general doctor and blood work, I was contacted and told an emergency appointment was scheduled for me at a rheumatologist. Within 2 days, I was diagnosed with severe rheumatoid arthritis and it was suggested I apply for disability. Gradually adapting a positive mindset, clean eating, and a consistent progressive exercise program, I regained wellness and re-entered the fitness industry. I would like to help motivate others and help others understand what living with RA and chronic pain management is like.
I am a speaker, writer, and advocate who uses many platforms to raise awareness for people with ankylosing spondylitis (AS). As a former college athlete and current professional model, I have a compelling story that is entertaining and emotional.
I have testified on bills in California State Health Committees, met with congressional representatives, spoken on panels, and given talks at both public and private events about living with AS. Additionally, I use my fashion image as a platform to drive awareness.
I am comfortable engaging with members of the media, pharmaceutical companies, and nonprofit organizations about all topics related to chronic disease, including lifestyle and disease management, legislation, education and awareness.
Given these experiences and more, I am equipped to offer a range of services including public speaking (able to travel), being a poster child for campaigns, writing columns or blog posts, participating in fashion shows or art photo shoots, and more.
I am a nurse and respiratory therapist. My daughter has a progressive heart disease and while being her healthcare support I have found myself being an advocate for many others. I am now doing this as a career. My mission is to be able to accompany the client through their illness or wellness to a meaningful experience.
Office visit companion
Care plan review and advising
Locating specialist for needed care
Audit medical billing and/or intervention as requested
Coordinate home care to aid in keeping client grounded in their environment
Evaluating facility needs if home care is not feasible
Acquiring durable medical equipment when applicable
As a person living with the migraine disease, cluster headaches, fibromyalgia, and rheumatoid arthritis I've learned the skills, confidence, and knowledge needed to play an active role as a patient advocate. Twice, I lobbied on Capitol Hill as a migraine and cluster headache patient during Headache On The Hill. I've also had the opportunity to appear on HuffPost Live and Al Jazerra, where I spoke openly about my neurological disorders. Besides being a full-time patient, invisible illness advocate, and contributing writer for the Today Parenting Team; I am a caregiver to a teenager living with abdominal and chronic migraine. Due to my son's unpredictable health, I even learned how to work efficiently with our school district to ensure my teen has the appropriate academic accommodations.
Event Speaker, Consultant and Patient Advocate
My mission as a patient advocate is to be proactive, by educating and empowering other patients to best utilize the vast amount of tools right at their fingertips, and to build communities that educate and inspire. Understanding that everyone is a patient, being increasingly aware of healthcare advancements, the changing medical landscape and technology developments…I encourage collaboration, education and having the voice of the patient loudly be heard.
My expertise is in health research, specifically in giving specific medical research assistance to patients with new diagnoses. I have multiple chronic health issues including (but not limited to) asthma, Cushing’s Syndrome, peripheral neuropathy, and fibromyalgia. Though I have a Master’s degree in public health, I often find it hard to convince medical personnel that I am an expert in and thoroughly understand my medical conditions. Meeting health challenges with humor is very important to me; I have found that laughter is indeed the best medicine.