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. These Top 10 Best in Show: Twitter Patient Leaders manage to create easily digestible 280 character tweets to support, educate and encourage their communities. Whether they’ve created their own Twitter chat, participate actively in others’ chats, push out words of encouragement – they are the model of Twitter for #health
Ashley Levinson Sells
PCOS Patient Leader
Ashley has served PCOS and chronic illness communities for over 18 years. She actively participates with multiple PCOS and health organizations to advance education and awareness for PCOS and chronic illness in social media and continues to advocate for PCOS and chronic illness through awareness events and legislative action in D.C.
Founder, #LemonFaceChallenge & #Heart4PCOS social media campaigns. 2006 Discovery Health Channel – Mystery Diagnosis Lobbying #HRes864 and #SRes336 in DC 2016 Ricardo Azziz PCOS Challenge Leadership Award PCOSC Magazine, copy editor PCOSC Patient Advisory Board Speaking 2 Heart Network, Advisor PCOS Petition with 20K supporters Connect with the 2018 WEGO Health Awards Best in Show: Twitter winner, Ashley.
Younger Onset Alzheimer’s Patient Leader
“In March of 2016 at the age of 51 I was diagnosed with Younger Onset / Early-Stage Alzheimer’s Disease. Since my diagnosis, I have been working with great fervor with the National Alzheimer’s Association as a member of the National Early-Stage Advisory Group and a Early-Stage Ambassador with the Delaware Valley & Greater NJ Early-Stage Advisory Councils and an Alzheimer’s Congressional Team member. I advocate and create awareness for younger-onset Alzheimer’s daily via social media channels like Twitter, Facebook, LinkedIn, Instagram and Google+. “ Learn more about Jeff.
Buddy Project is a non-profit movement that aims to prevent suicide and self-harm by pairing people as buddies and raising awareness for mental health. Since April 8th, 2013, Buddy Project has been pairing teens and young adults with a buddy. We pair based on mutual interest and age. As of March 7th, 2018, over 211,000 people have signed up to be paired with a buddy. We are currently working on creating an app that will pair people as buddies based on their interests and age. Buddy Project is a 501(c)(3) organization that supports mental health and recovery centers throughout the United States. Read more about the Buddy Project.
Disability Rights Patient Leader
Ace’s advocacy is centered around intersectional feminism, with a specific focus on disability rights. She lives with hypermobile Ehlers-Danlos Syndrome, dysautonomia, and mast cell activation syndrome, which all make for a particularly rebellious meatcage. Ace writes about disability inclusion and representation. She has bylines at Huffington Post, SELF Magazine, Bustle, and Bitch Magazine. She has been featured in an Upworthy video, as well as at the Guardian and The Economist. She’s been featured on several podcasts, including Maximum Fun’s Reading Glasses and WNYC’s Note to Self. She’s also very active on Twitter! Check out Ace’s nominee profile.
Cystic Fibrosis Patient Leader
“I have two goals in life: don’t die from Cystic Fibrosis and make people laugh. So far, I’m 2 for 2. Spirit fingers. Random accomplishments include the publication of my first children’s book “Two Cents” – a percentage of the profits go toward the Cystic Fibrosis Foundation. Bachelor’s degree – graduated top of my class. Guest lecturer for Robert Wood Johnson Medical School. Full-time public relations professional. Children’s advocate. Self-proclaimed comedian. Noodle connoisseur. Can’t breathe. Probably needs to sit down. Stops to smell the 65 roses regardless.” Connect with Nicole.
Mental Health Patient Leader
Erez created “The Shek Check” YouTube Channel after a Suicide attempt in 2016 that opened his eyes to so much. Living with Bipolar Disorder was not the only part of his Mental Health that needed to be cared for. “The Shek Check” explores the way we feel, think and behave (our Mental Health in totality), bringing awareness to its universal nature through sharing of lived experiences and humor, “The Shek Check” promotes the fact check that matters the most to our Mental Health, the one that starts within us. Normalizing the conversation so we can all start having those conversations, letting a little more light into ourselves. Learn more about the Shek Check.
Chronic Illness Patient Leader
I’ve been living the chronic life for 10 years, with arthritis, fibromyalgia, sarcoidosis, & more. I aim to show others who are suffering that they are not alone, and to educate those who care but don’t understand how to be there for us in the ways we really need them to through my blog, Float Like a Buttahfly. I’ve fallen in love with advocacy, and do that as much as possible, whether by social media, phone, email, or in person at my legislators’ offices. I also help plan awareness events, and recruit & train newer advocates. This year, I hosted the first sarcoidosis event in my area (an accessible/inclusive “walk ‘n’ roll”), and I’m working to start a support group in the fall. Follow Kerry.
Anna Evangeline | Six Hips
Juvenile Arthritis Patient Leader
Anna is an athlete and advocate living with juvenile arthritis since age 11. Her blog “Six Hips and Counting” is named for the 6 hip replacement surgeries she’s had starting at age 14. Growing up and pursuing college, a career, relationships, etc. on top of managing her health has often left Anna feeling lonely and isolated from her healthy peers – to this day she shares with unflinching honesty what it’s like when the majority of one’s lived experience is through the lens of “being sick.” As a result, the cornerstone of Anna’s advocacy is ensuring that other young adult patients feel less alone and that there are healthcare solutions designed to meet their unique needs. Connect with Anna.
MS Patient Leader
“After being dx’d with MS in November 2012, I wanted to do my part in helping others who are diagnosed. Talking with others via social media helped me the most & helped me realize this disease was manageable. I created Must Stop MS! on Facebook as a place to provide support, raise awareness & provide news & information about Multiple Sclerosis. I ventured into the Twitter and Instagram shortly after. The MS Community is filled with amazing & supportive people & are the strongest people I know. I host #ChatMS every Monday at 7pm EST, which is a weekly chat dedicated to MS. #ChatMS is on Twitter, via a Facebook closed group, and now Instagram. It’s a great place to get support, learn, & share!” Learn more about Randy and #ChatMS.
RA Patient Leader
“Diagnosed with RA in 1986-age 26. I’m often disappointed by others who don’t realize the true impact of the systemic inflammation that comes with this disease! When people aren’t personally touched in some way, how could they really know. I lived in silence for too long. I decided to try Twitter in 2011, hoping to find others affected by RA and to spread awareness. It was then I finally found my voice! The most valuable aspect for me is that I have met thousands of truly inspirational people fighting the same battle and I became a strong patient advocate. I have overcome great challenges & continue to since diagnosed & I share my experiences in hoping to help others to never give up. Connect with Therese.
Time to update who you follow! Scroll back to connect with these 10 talented tweeters and click below to share the inspiration with your own followers.