There are many reasons Patient Leaders get involved in advocacy, Tory’s just happens to be her daughter.
Tory’s daughter, Mariah, was active and full of energy from birth, so it was alarming when her daughter started complaining of joint pains and suddenly became inactive at age four. The cause of Mariah’s suffering was a mystery to her doctors until she finally was diagnosed in September 2011 with a form of arthritis called Polyarticular Spondyloarthropathy.
A life changing condition? Certainly. But Tory was ready to fight on her daughter’s behalf.
She created Mariah’s Movers, an organization to raise awareness for juvenile arthritis. In addition to informative and active social media pages, the organization hosts an annual carnival to raise money in hopes of finding a cure.
‘There are over 300,000 kids living with chronic pain because of this disease. Our goal is to raise awareness and give hope that one day we will have a cure,” Tory shares
The Patient Leader even takes her voice to Harrisburg and Washington DC to advocate for her daughter, and community, yearly. Tory reminds us, “My daughter has juvenile arthritis but juvenile arthritis does not have her!”
So really, it’s no surprise that Tory won the 2016 WEGO Health Awards Advocating for Another Award. #WEGOHealthAwards Winners Series Podcast host, Shane Schulz had the chance to sit down and chat with Tory to learn more about her mission for the juvenile arthritis community.
Missed our last WEGO Health podcast? Listen to the full #WEGOHealthAwards Winners Series Podcast here.
Kristen Long is the Patient Leader Network Coordinator at WEGO Health. Her own health experiences have inspired her to empower other patients and encourage the power of patient advocacy. Check out her blog and follow Kristen on Twitter and Facebook.