I am a professional cancer survivorship expert working at a leading lung cancer non profit. I have been a patient advocate for over 14 years.
I have the unique past experience of being both a cancer patient and a lung cancer caregiver and I represent the voice of the patient and caregiver in all that we do as a Foundation. I am the founder of the Lung Cancer Support Community, helped start the first lung cancer 5K and in-person support group and a recipient of numerous awards and articles. I sat on the board of Global Resource for Advancing Cancer Education, past LiveSTRONG Leader, current member of AONN, ASCO and VMCC as well as collaborate with national organizations and healthcare providers across the country gaining valuable insight and knowledge. I contribute to articles & blogs and have been asked to speak at events with a special interest in cancer survivorship, patient support, caregiving, cancer advocacy training & the use of social media to promote good works.
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
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]
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.
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.
Hetlena has been integral in bringing lupus to the forefront of awareness in South Carolina. Her main goal is to raise awareness of and advocacy for lupus patients, like herself, in South Carolina. Hetlena now serves as the Chief Volunteer Officer of the newly transitioned LFA South Carolina Community Partner (LFASCCP). She leads and coordinates the training of support group leaders in the state of South Carolina. Her work with lupus sparked a partnership with the Institute for Partnership to Eliminate Health Disparities (IPEHD) Arnold School of Public Health of the University of South Carolina to spread the word on the development of a South Carolina Lupus Registry. Hetlena’s flagship company, The Lupus Liar, allows her to educate, advocate and raise awareness about lupus as a highly sought after speaker, critically acclaimed author, coach, presenter and trainer. She is well-versed in data management, community awareness strategies, and lupus education presentations.
I am a former news journalist, turned lupus advocate who uses her candid experiences of living with lupus, chronic illness and an invisible disease to spread awareness, particularly among underserved populations. I have the unique perspective of a patient advocate and the skills of a professional journalist and copywriter to see the whole story and public relations angles. I'm also able to make complex content digestible for the general public. I've provided lupus education through many platforms, including legislatively and through social media and radio work. I am interested in connecting with and creating effective content for healthcare companies that are looking to include an authentic, patient voice at the table.
Advocacy work includes:
Feature by the US Department of Health and Human Services’ Office on Women’s Health to highlight Lupus.
2016 WEGO Health Activist Hero Nominee
2017 Lupus Research Alliance Patient Advocate for Annual Advocacy and Hill Day in D.C.
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
Whitney was diagnosed with Epilepsy in 1986. Growing up with Epilepsy motivated her to start a blog called Changing Focus Epilepsy Edition. Through this blog, Whitney share's her life's journey, motivating others to take control of their epilepsy, build better doctor/patient relationships, and how to practice self-care. Whitney graduated from college with a BS in Information Systems Security. The knowledge gained in the IT field gives her the flexibility to self-host and manage her website, test and manage new health apps and more. Whitney's Epilepsy Advocacy work gives the opportunity to host webinars, appear at conferences for speaking engagements, work with companies to create blog content and has given her the opportunity to sit on a number of Advisory Boards. Whitney has worked with Self Care Catalysts, Sunovion Pharmaceuticals, Healthsparq, Healthline and more.
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.
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.
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'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.
Encourages awareness and utilizes social media to help educate patients, providers, physicians, pharma, and key healthcare stakeholders on health, the e-patient movement, participatory medicine, healthcare social media, and lupus. Community manager for more than five successful social media outlets.
I'm a patient advocate & content writer living with type 2 diabetes. I would like to work with you to advance digital health, the patient's voice, & the understanding of daily life with a chronic health condition.
Do your interests include any of these?
• Digital health (wearables, devices, apps, etc.)
• Raising the patient voice to influence engagement, treatments & policy
• Informing medical, pharma, & healthcare professionals about the day-to-day reality of life with type 2 diabetes
Are you looking for someone with any of these skills?
• Usability testing
• Contributing to discussions about patient engagement in health care & health policy issues
• Producing informative & persuasive content
If you answered "yes," then let's talk.
I'm available & here are a few of the things I can do:
• Test digital health products or services
• Discuss issues & ideas related to patient engagement, health care, or health policy
• Strategize & write content
In the early 90s I went from my healthcare journalism background to both print and online marketing. I have a special expertise in reaching America's aging population, their families and caregivers. For 10 years I've had a Boomers & Beyond section on my website. I write and plan for this growing arena working with Fortune 500, non-profits, hospitals and many others....helping them win awards, gain recognition. You'll see much more as you continue.
I am a local community leader for Myasthenia Gravis in one of the largest and fastest growing physical support groups in the United States. I founded the MG Hope Foundation and I also established and lead one of the world's largest international online support groups for MG, Myasthenia Gravis Unmasked, where I have focused my efforts on advocacy, lay and medical education, developed patient packets, at home emergency response charts and other educational materials, I work with medical leaders, caregivers and patients all over the world on navigating the nuances of the medical system, symptoms and treatment, up to date information on the latest research and clinical trials, obtaining appropriate care, acting as a liaison in times of emergency while offering ongoing emotional support. I have experience working with the MDA and MGFA and am currently engaged in scripting, directing and producing video and photo campaigns for international awareness through my foundation.
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)
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.