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. Sometimes the top Patient Leaders aren’t patients, but rather caregivers and for anyone who is a patient, you know just how much your caregiver supports you. Below are the Top 10 Advocating for Another Patient Leader allstars, who’s passion for advocacy comes from the love of another.
Children’s Mental Health Patient Leader
Chrisa Hickey is an eCommerce and digital marketing professional, blogger and mental health advocate specializing in providing education and support for parents of children diagnosed with serious mental health conditions. Chrisa began her journey into the world of childhood onset mental illness when her middle child, Timothy, was diagnosed with Emotional Disorder Not Otherwise Specified at age 8, Bipolar Disorder Type 1 and schizophrenia at the age of 11. In addition to writing her blog, Chrisa has guest blogged for Pulitzer Prize nominated author Pete Earley, BringChange2Mind, and has appeared on CNN, NPR, and The Ricki Lake Show. Connect with 2018 Advocating for Another winner!
Lung Cancer Patient Leader
“I was diagnosed with Stage 4 Lung Cancer in June of 2009. Since then I have done radiation, chemotherapy, targeted therapies and immunotherapy. My girlfriend Penny passed from Small Cell Lung Cancer in 2014, My last promise to her was to advocate for lung cancer awareness and more research. I keep that promise by being a Consumer Reviewer for the Lung Cancer Research Program, sit on multiple survivor boards including Lungevity and moderate support groups on Facebook.” Follow Don and learn more about his advocacy journey.
Childhood Cancer Patient Leader
“I started making care packages which I call Happy Bundles for children with cancer and special needs back in June 2015 when I was 17 or 18. A happy bundles is a package full of fun activities such as coloring items, craft items, toys, and all kinds of other goodies! I use all donations and sometimes I use my own money if I really need to. I have helped over 500 children since I started this and I hope to keep bringing more smiles to kids faces. Childhood Cancer is something I have become very passionate about. I have never been so passionate about a cause. I have met so many amazing families and even have made a ton of friends through doing this. Awareness is KEY! ” See where Hannah has sent Happy Bundles.
Rare Disease Patient Leader
“My mission is to educate the general public and the medical community about Arnold Chiari Malformation and its associated conditions as well as the need for accessibility and inclusion for the disabled community. My young daughters have Chiari and it started me on this path to advocate for others. I want a brighter future for them and everyone fighting for equal opportunities in life.” Connect with Crystal.
Rare Disease Patient Leader
“I’m Krystal, the mom of Haley, an infantile-onset Pompe Disease survivor. Haley is 12 yrs old and has far surpassed her life expectancy of 1! It’s my goal to help her live her life to the fullest, despite being in a wheelchair. I also want to show others that you can be happy and live life regardless of your situation.I love to talk with newly diagnosed families and assist w/ any questions/issues. I’ve created a Facebook group to bring those around the world together. Another big passion is to advocate for those w/ Pompe Disease & other rare diseases. We’re very involved in initiating newborn screening for Pompe Disease & other rare diseases in several states, w/ a Bill named after Haley in NC.” Learn more about Krystal’s advocacy.
Rare Disease Patient Leader
“After I was diagnosed with Ehlers Danlos Syndrome & Dysautonomia in 2016, I desperately sought to derive meaning from my new reality. I quickly launched a project known as Cards For Warriors, which sends handmade letters to those fighting life-altering medical conditions. After seeing the project’s impact, I wanted to make an even bigger difference. In 2017, I decided to expand the organization into an online community known as Fight Like A Warrior. I built Fight Like A Warrior from my freshman dorm room & added social media, a community blog, YouTube channel, & more! We now have over 11,000 warriors facing a variety of conditions & continue to grow in order to support & advocate for them!”
Childhood Cancer & Autoimmune Disease Patient Leader
“I started a project called Team Cure Cancer (now Team Spread Hope) in late 2014 to raise awareness for childhood cancer. Since then, I have sent care packages to kids all over the country and been to different cities to visit patients. I work to raise awareness by interviewing families and posting stories on Instagram to encourage support for more funding for kids. I also had the chance to go to Washington, D.C. to advocate for the STAR Act, which just became a law. My own diagnoses of EDS and gastroparesis recently inspired the change for the care package program to now serve children with any life-altering illness and the new name of my project. I want to spread hope and joy to everyone.” Discover more of what Sydney is doing for her community!
Sickle Cell Patient Leader
“I wanted to capture how it’s an invisible illness. You see me and I look completely normal – I go to work, I work out, and chill just like everyone else. When I go ghost due to crisis pain, I often hear ‘but you don’t look sick’, which is exactly how I want to live my life. I’ve never let it define who I was and what I was capable of doing.”
Hyperhidrosis Patient Leader
“Hyperhidrosis (excessive sweating) affects five percent of the global population, but I bet this statistic is actually much greater. The problem? Too many people are ashamed of the skin they’re in and don’t speak up or seek help. It’s time to end the stigma. I’ve lived with hyperhidrosis all of my life and offer a unique perspective on this condition that can be mentally, socially and professionally debilitating. I’m creating hyperhidrosis hope and awareness one drop at a time, living my truth and letting others know they are not alone. My story is your story.”
The Invisible Hypothyroidism
Thyroid Patient Leader
“I started advocating with one hope: to reassure other thyroid patients every single day that they are not alone. 750 million people worldwide have thyroid disease, but no one talks about it openly and a lot struggle in silence; desperate for someone to listen and understand. My writing comes from a deeply authentic and honest perspective as I not only share what I learn from researching while on my own journey back to good health, but also my own completely honest experiences that resonate with many. I’m on a mission to reach as many thyroid patients in need of support as possible and challenge the severe lack of knowledge about hypothyroidism. I know this is my purpose in life.” Click to learn more about this Patient Leader!
Do you have a caregiver or support you’re thankful for? Don’t forget to let them know, we all need support to give support!
Connect with more Patient Leaders in the community: Check out and follow all the WEGO Health Awards nominees.