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2018 Top 10 Lifetime Achievement Patient Leaders

There are thousands of Patient Leaders working day in and day out to educate, raise awareness and support their patient community. The WEGO Health Awards give us the chance to recognize Patient Leaders across all condition areas and platforms, to ultimately find the top Patient Leaders in each space.

In the Fall of 2018, we presented 16 WEGO Health Awards to Patient Leaders who exemplify excellence. To continue the celebration and to recognize the Patient Leaders community members endorsed, we’ve compiled the Top 10 Patient Leaders in each category.

WEGO Health Lifetime Achievement Award: Each year we come across Patient Leaders who continue to rock the health world. These Patient leaders are true stars who continue to shine and don’t fit into just one category. Let’s face it, they’ve done it ALL!

These Top 10 Lifetime Achievement Patient Leaders are the ultimate #PatientLeader role models: 

 

 

Natalie Y. Beavers

Epilepsy Patient Leader

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“I’ve survived epilepsy for over 35 years now and all I want to do is support and advocate for the many lives affected with this severe brain disorder. I came up with the idea to start a charity to support the many lives affected by epilepsy when I was hospitalized during my brain surgeries in 2008. Angels Of Epilepsy Inc. is a nonprofit 501(c)(3) charity and advocacy that provide the needs for survivors and their families. We provide gifts and supplies to patients that are hospitalized. As well as assistance with patients that can’t afford their medications and provide transportation for those unable to drive. I’ve also created “The Seizure Diary” that has now made it to 7 countries.” Connect with the 2018 Lifetime Achievement winner.

 

 

Barbara Jacoby

Breast Cancer Patient Leader

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“I am a 2x breast cancer survivor who was given a course of treatment by my oncologist that was determined by a set of statistics based upon other patients of the same age and the same type and stage of cancer. This didn’t seem right so I requested a referral to a 2nd oncologist who tested my cancer and together we set a course of treatment. From my experience, I became a patient advocate through my letlifehappen.com site with a weekly blog post for more than 10 years and a daily posting for 5 years of an “In the News” item of current cancer information, shared worldwide through social media. This is to empower patients with knowledge about all aspects of care from diagnosis to forever.” Click to learn more about Barbara.

 

 

 

Tom Kindlon

Myalgic Encephalomyelitis Patient Leader

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“I believe there is power in numbers and together we can make a difference; conversely, I feel that if I and others don’t try, we will be ignored and fobbed off indefinitely with rehabilitative therapies like graded exercise therapy and cognitive behavior therapy based on scheduling increased activity…I’ve had 15 letters published in various medical journals along with over 100 e-letters. My proudest achievement was the publication of my paper, “Reporting of Harms Associated with Graded Exercise Therapy and Cognitive Behavioural Therapy in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome” at the end of 2011. I had previously been quite academically able but things are more difficult now with M.E. so it took a lot of work and sacrifice over more around 15 months.” Connect with Tom.

 

Jenni Grover

Chronic Illness Patient Leader

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Jenni Grover is the Founder of ChronicBabe.com, where she draws on her experience with fibromyalgia and other conditions to teach women to craft incredible lives in spite of illness. She’s been doing this work since Spring 2005. For more than 26 years, Jenni has enjoyed success as an activist, writer, editor, and consultant, helping women share stories of strength, wellness, and inspiration in the face of adversity. ChronicBabe’s offerings include a website, speaking engagements, multiple social media presences, a video series, a free newsletter, her book “ChronicBabe 101: How to Craft an Incredible Life Beyond Illness,” and more. Click to learn more about the Chronic Babe community.

 

 

 

John M. Grohol

Mental Health Patient Leader

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“I’ve been advocating and writing about mental health issues online since 1992, starting with the indexing of mental health support groups pre-web, and then in sharing the symptoms and treatments of mental illness on Psych Central beginning in 1995. Since that time, we’ve reached dozens of millions of people with objective, free mental health information, support groups, hundreds of blogs, and scientific screening quizzes. I won’t stop until the stigma, prejudice, and discrimination associated with mental illness has been eradicated from the world.” Learn more John and the Psych Central community.

 

 

 

Sharon Waldrop

Chronic Illness Patient Leader

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“For 25 years, I have worked to reclaim my life from chronic illnesses, with fibromyalgia (FM) being the most life-altering one. I went from being on disability to getting married, having kids, a career, and even rock climbing! This journey was not easy and there was no roadmap. I am determined to create a roadmap and support for others. One year after my FM diagnosis I started a Support Group that grew into the Fibromyalgia Assoc. of MI. Thanks to our volunteers, our group has provided support, education and advocacy to over 100,000 people since 1997. I have been honored to represent patients for PCORI, OMERACT, Cochrane and more. Patients advocating together will improve healthcare.” Follow Sharon. 

 

 

 

John-Manuel Andriote

HIV/AIDS Patient Leader

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“I began reporting on HIV-AIDS as a journalist in 1986. I had lost two friends to AIDS by then and hysteria about the epidemic was rampant. I saw the opportunity to find personal meaning and purpose by focusing my professional work on a massively important public health crisis that was also devastating my friends and my gay community. After all I had witnessed, it was the shock of my life when I myself was diagnosed in 2005. A few months later, I came out about my diagnosis in a first-person story for the Washington Post. I had to learn to write a whole new HIV story: Mine. I choose to write it as a tale of courage and resilience, and I try to help others find and celebrate their own heroism.” Learn more about John’s advocacy journey.

 

 

Frank Rivera

Rare Disease Patient Leader

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“I am a patient advocate as well as a patient for Sarcoidosis. I was diagnosed in 2011, but was misdiagnosed since 2004. I became an advocate when I found out that Sarcoidosis receives the least amount of Government support. I have spoke at 2 Congressional briefings to help raise awareness of the disease. I have been appointed National Sarcoidosis Ambassador. I have also worked with the Rare Disease community to advocate with other org. to raise awareness and also have set up ” A Day For Rare Diseases” an event open to the public to raise awareness for all rare diseases on October 15, 2016. In August 2017 I was diagnosed with Parkinson’s. I have been downgraded from chronic to terminally ill.” Learn more about Frank’s work in the rare disease space.

 

 

 

Trevis L. Gleason

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MS Patient Leader

Trevis L. Gleason’s Life With MS Blog is one of the oldest and most respected patient blogs on the topic of MS in the world. An award-winning author and named The Most Influential Person on the web on the subject of MS by Dr. Mehmit Oz in 2015, the Life With MS blog is sought out by patients, caregivers, medical professionals and policymakers alike. Trevis is a volunteer advocate with the National MS Society (USA), MS Ireland and the MS Society of the UK. Follow Trevis. 

 

 

 

Howard Chang

Psoriasis Patient Leader

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“I’ve lived with severe skin conditions, mainly psoriasis and eczema, since childhood. I advocate for patient rights and care through the National Psoriasis Foundation as a Psocial Ambassador and Advocacy Action Network volunteer for the Western Region. I also blog, having recently celebrated a decade of writing my featured column on Everyday Health, The Itch to Beat Psoriasis, and started my website, PsoHoward.com last year. I’ve enjoyed serving on patient panels and advisory groups, including the HealtheVoices and HealtheVoices Impact Fund advisory committees.” Connect with Howard. 

 

 


Hats off to these tremendous Patient Leaders! Their hard work and dedication are improving the lives of thousands of fellow patients. Take a moment to follow each of these role models and share the inspiration with your community

Are you part of our community? Make sure you’re part of the WEGO Health Patient Leader Network for all the latest opportunities! Sign up here.

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