2018 Top 10 Best Kept Secret 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.

To recognize the Patient Leaders community members endorsed, we’ve compiled the Top 10 Patient Leaders in each category.  The Internet is a vast place, making it nearly impossible to find all of the amazing content that exists. For the Best Kept Secret category, we turn to the Patient Leader Network for recommendations of who we should be following in hopes of shining a light on the hidden gems of the online health community. Take a moment to follow these inspirational leaders and you’ll quickly realize why they’re a Top 10 Best Kept Secret…

 

Amber Wallace 

Ostomy Patient Leader

Facebook | TwitterInstagram

“Sup Ya’ll? I’m Amber! I have Crohn’s disease, and had a complete colectomy. I now live life with an ostomy bag, and a HUGE SMILE. I desire to use humor and lightheartedness to help educate and encourage other Ostomates. I want my YouTube channel, and other social media platforms to be a place where patients can not only learn, but be encouraged to live their life to the fullest. Life without a colon, and with a bag is pretty rad, and I like showing people that! I love Jesus, people, and queso dip. Check me out on Social Media at “Ostomy Diaries.” Connect with the 2018 WEGO Health Awards, Best Kept Secret winner Amber. 

 

Kate Weldon Leblanc

Infertility Patient Leader

Facebook | TwitterInstagram

Kate Weldon LeBlanc, BSW, MPA has been the Executive Director of RESOLVE New England (RNE) since January 2015. RNE is the leading voice and progressive driving force connecting the New England community on the many paths to parenthood. Kate has a strong personal and professional commitment to infertility. Prior to her arrival at RNE, she worked for the Center for Early Relationship Support of Jewish Family & Children’s Service, the Child Advocacy and Government Relations departments of Boston Children’s Hospital, and the Massachusetts Legislature. Kate holds a Bachelor’s of Social Work from Skidmore College and a Master’s of Public Affairs from the University of Massachusetts Boston. Learn more about Kate and RESOLVE New England’s mission. 

 

Mike Durbin

Diabetes Patient Leader

FacebookTwitter | Instagram

“I was diagnosed with Congestive Heart Failure in December 2008 at the age of 24. I was also misdiagnosed with type 2 diabetes at that time when what I actually live with is a form of type 1 diabetes called LADA. I began my blog, My Diabetic Heart, at first as a way to document and process what I was going through, and later continued to write in hopes that it would help someone else going through the same thing to not feel so alone. Nearly 10 years later, I’m still sharing my story because it has touched and inspired people to strive to make the most of their health and life. I live by my mantra, “A Little Heart Can Do Big Things”, and hope to impart that message to everyone.” Connect with Mike. 

 

Bev Late

Chronic Illness Patient Leader

Twitter | Instagram

“I’ve struggled with my health for years but my advocacy on a personal level is pretty new. In 2014, I shared my recent bipolar diagnosis on Facebook. My passion then grew stronger and louder. In 2016, I started a mental health advocacy project, involving a blog, social media & public speaking. In July 2017, I had a virus that triggered chronic pain which hasn’t ever left. Since, I was diagnosed with both fibromyalgia and endometriosis. I took a break from advocacy, but in May I came back bigger than before with a broader focus: chronic illness. I’m currently advocating with Instagram and in-person networking/volunteering while building a website and outreach plan behind-the-scenes. Do you advocate for both a chronic illness and mental health? Connect with Bev. 

 

Dale Reardon

Disabilities Patient Leader

Facebook | Twitter

“I am blind (Charlie is my seeing-eye dog) & from Australia. I want to help people with disabilities worldwide. I have created the My Disability Matters Club to provide a safe, respectful & tolerant online social community for the disability sector – but not for just PWDs, also friends, family, carers & businesses. Other social networks such as Facebook & Twitter have bullying, trolling & harassment towards PWDs & disability issues – MDM is providing a safe alternative to let you leave FB. I want to spread the message of equality, diversity & respect for all PWDs. MDM is in need of publicity, sponsorship, promotion & investment to help thousands more so please endorse/support MDM today.” Learn more about MDM.

 

 

Kelby | Peachy Pains 

Autoimmune Patient Leader

TwitterInstagram

Kelby is an ambitious autoimmune advocate who is passionate about Health Public Policy. In 2008 she had to shut down the doors to her thriving event planning business because she was denied health insurance because of her pre-existing condition – Ankylosing Spondylitis (a form of autoimmune arthritis). “This nomination means so much to me because I love spreading awareness about autoimmune diseases, not only through patient organizations, but personally too. I love cheering on other fellow advocates and patients alike in their successes – everything from recovering from surgery, to achieving wellness goals, to having their Representative sign onto a bill.” Follow Kelby.

 

Whitney Carter

Chronic Illness Patient Leader

Facebook | Instagram

“My life changed in 2011 when I was diagnosed with Lupus at the age of 14. I was later diagnosed with CNS Lupus, meaning that my own body was attacking my central nervous system. I was immediately started on Plasmapheresis followed by Cytoxan and Rituxan, chemotherapy drugs typically used in cancer patients. Due to treatments and cognitive issues, I had to stop high school. Later, I was also diagnosed with Postural Orthostatic Tachycardia Syndrome (POTS), Epilepsy, CSF Leaks, and Autoimmune Autonomic Ganglionopathy. These diseases have changed my life, but they have also given me a passion for patient advocacy. Some ways I advocate are through my blog, instagram, facebook page, and support groups.” Click here to see Whitney’s nominee profile.

 

Mila Clarke Buckley

Diabetes Patient Leader

Facebook | Twitter | Instagram

“One day, I wasn’t feeling too well. That day turned into weeks, and then into months. I finally took myself to the doctor to get a good answer. I neglected myself for a long time – something I should never have done. In just a moment, it felt like the world stopped. I was diagnosed with type 2 diabetes. I searched for resources online, but I discovered that there weren’t many people my age writing about how they deal with having type 2 diabetes, so I decided to share my experience and my progress and help others deal with a life-changing diagnosis and change a long-existing stigma about this chronic illness.” Connect with Mila. 

Triage Cancer

Cancer Patient Leaders

Facebook | Twitter | Instagram

Triage Cancer is a national, nonprofit organization that provides education on the practical and legal issues that may impact individuals diagnosed with cancer and their caregivers, through events, materials, and resources. Cancer care is expensive and those costs pose a serious challenge to those diagnosed with cancer and their families. Educating people about their rights and options under the law (e.g., access to reasonable accommodations, paid leave options, disability insurance benefits, health insurance options, health insurance appeals, etc.) may assist in mitigating financial toxicity. Ultimately, Triage Cancer helps people move beyond diagnosis. Learn more about Triage Cancer. 

 

Asha Brown

Diabetes Patient Leader

Facebook | Twitter | Instagram

Asha Brown is the Founder and Executive Director of We Are Diabetes, where she works with families, patients, and health professionals across the USA. She uses her personal experiences with ED-DMT1 to offer hope and support to those still struggling. She also establishes relationships with eating disorder treatment programs and diabetes organizations across the county to help connect people to appropriate care. Asha has presented at NEDA, AADE, and JDRF, among others. We Are Diabetes has been recognized as a national support resource by the American Academy of Diabetes Educators and the National Eating Disorder Association. Connect with Asha and learn more about We Are Diabetes.


Well, we’re glad the secret is out because these Patient Leaders are too tremendous not to share!

 

 

Looking for new Patient Leader inspiration on Instagram? Follow the Top 10 Best In Show: Instagram




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