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. We hope that these stories might inspire you by showing that there is a range of activities you can do to advocate and raise awareness, depending on your health, energy and time. All of the people profiled do this is a labor of love by donating their time to the cause.
Brad Carlson, South Carolina. 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. He has been part of education programs for people living with RA. Brad also works with the American College of Rheumatology, advocating in Washington regarding RA, disability and Medicare.
Christine Schwab, California. Christine has formed a Facebook page called Christine’s Kids to raise awareness about juvenile arthritis. Every week, 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 coverage that more accurately reflects what happens in various types of inflammatory arthritis. Christine hopes that this will increase understanding of the different types of arthritis, as well as increase funding to research.
Elisa, Connecticut. 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 Brandon-Metz, Ohio. Heather shares information about RA with family, friends and acquaintances, talking about the topic and sharing interesting articles. She 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. She hopes that the RA community working together will be able to raise awareness about this disease to the level of breast cancer awareness
Jennifer Dye Visscher, Colorado. Jennifer started her awareness and advocacy work for ankylosing spondylitis with Art Apple a Day, painting a picture of a different apple every day for a year, culminating in a fundraiser in New York City. Her next initiative was a different kind of awareness Walk. Since inflammatory arthritis is unpredictable, the goal was to create the type of Walk that could be done over time. At the same time, she wanted to help people create a new habit that could keep them mobile. Walk Your AS Off took place over 10 weeks between March 1 and May 5,World Ankylosing Spondylitis Day. Participants formed teams and walked when they could, using a pedometer. The goal was to circle the globe in steps (approx. 49,803,100, based on 2000 steps per mile). The 28 teams met the goal and then some, walking over 60 million steps!
Kelly Young, Florida. 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. She also hopes that the efforts of her website and the RPF will help healthcare professionals to become better educated about the disease so that the people they serve can have the best care possible.
Kimberly Radomski, Michigan. 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 for the group and others who want to join. Her goal is to bring attention and awareness to our healthcare professionals, pharmaceutical companies as well as in social media.
Lindsay Junkin, Toronto, Canada. 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. She believes that the more people talk about the realities of the disease, the better future we are making for each other until lasting solutions are found.
Shannon Ragland, Georgia. 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 3pm ET. Shannon has created a Twibbon for rheumatoid arthritis that people can use on their avatar to help raise awareness. She was also Volunteer Coordinator for the first Rheumatoid Patient Foundation (RPF) exhibit at the annual meeting of the American College of Rheumatology.Shannon believes it is important to change the name of the disease to Rheumatoid Autoimmune Disease/RAD or Rheumatoid Disease/RD to foster a better understanding of its complicated nature.
Susan Gannon, Pennsylvania. 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.
Don't forget to enter our amazing awareness contest! You can win some great prizes and help change perceptions of RA. It closes Thursday, May 31 at 11:55 PM ET, so enter today!
Lene is the author of the award-winning blog The Seated View