10 Grassroots Advocates for Rheumatoid Arthritis
Many people who live with rheumatoid arthritis are engaged in advocacy and raising awareness in one way or another. Many more want to get involved, but have limited energy or don’t know what to do. As part of our celebration of Arthritis Awareness Month, we wanted to profile a number of people who have found various ways, big and small, to spread the word.
Brad, one of our Health Guides, volunteers with The Arthritis Foundation. He is part of the Board for the Arthritis Walk, working to raise funds for research and programs, as well as awareness about RA. Brad is one of the Honorees for the Myrtle Beach Jingle Bell Run and his Squeaky Joints team is the #3 fund raiser nationwide. Brad also works with the American College of Rheumatology.
Christine has formed a Facebook page called Christine’s Kids to raise awareness about juvenile arthritis. Parents send in pictures and stories about their children and on Saturdays, Christine posts that week’s child. As someone who has worked extensively in television, she also advocates with the media to get more accurate coverage of the various types of inflammatory arthritis.
Elisa started her website Sjogren’s Style to add to the community of people with autoimmune disease who support each other and to share the information she's learned. On her blog, she posts information, ideas, tips, and a weekly round-up of links to articles related to autoimmune diseases and coping with chronic illness. Her topics include diet, coping, style and many others.
Heather is also part of a strong support team, composed of friends with RA that she's met through Twitter, often discussing balancing having a chronic illness with being a parent. Heather believes in finding "teachable moments" in the everyday to spread awareness about inflammatory arthritis and the impact it has on people's lives.
Jennifer started a unique RA awareness project, a type of Walk that could be done over time. Walk Your AS Off took place over 10 weeks as participants formed teams and walked when they could, using a pedometer. The goal was to circle the globe in steps and the 28 teams met the goal, some, walking over 60 million steps!
Kelly is the author of RA Warrior where she writes about topics related to RA. She is the founder of the Rheumatoid Patient Foundation (RPF), which works to make the medical community more aware of patients' needs and to bring accurate awareness to the public of RA-related matters. Kelly's goal is to ensure that people with RA have the resources they need for education and support.
Kimberly is the Support Group Leader for the Scleroderma and Autoimmune Related Diseases for the Scleroderma Michigan chapter and also works with the American Autoimmune Related Diseases Association. She runs an education forum on Facebook and her goal is to bring awareness to health care professionals and pharmaceutical companies.
Lindsay is the lead Patient Advocate chair with UCAN (the Understanding Childhood Arthritis Network). This international organization was created to foster collaboration and standardization within the juvenile rheumatoid clinical research field. Lindsay’s goal in her advocacy work is to change perspectives, creating awareness that children can get arthritis, too.
Shannon is active on a variety of social media platforms. She starts conversations and broadcasts information about JIA and RA through her Twitter and Facebook accounts. She is a member of #Rheum Chat which runs on Twitter every Sunday at 3 pm ET. Shannon has created a Twibbon for rheumatoid arthritis that people can use on their avatar to help raise awareness.
Susan reaches out to others diagnosed with psoriatic arthritis to offer support and information. She is committed to helping others through the bad times, hoping to lighten their days and give them the information they need to deal with the health care system and daily life with a chronic illness.