Staci Penner and Graci Diggs have devoted their voices, stories and wholehearted advocacy efforts to helping the arthritis community live better lives. Today, we celebrate their advocacy efforts by announcing their selection for the Arthritis Foundation’s Edward M. Kennedy Advocacy Leadership Award and Emerging Leader Award, respectively.
Staci has experienced the devastating effects of arthritis personally and professionally. As an occupational therapist, she knows the clinical side of the disease. As the mother of a young girl diagnosed with polyarticular juvenile arthritis and being diagnosed herself with rheumatoid arthritis and osteoarthritis, she knows the personal battles and struggles that come with the disease.
As an Arthritis Foundation Advocate, Staci is involved on local, state and national levels by serving as the advocacy chairperson of her local advisory board, the advocacy co-chair for the State of Kansas and a national Platinum Ambassador. Her work has included recruiting more than 200 new advocates at local events, like the Jingle Bell Run, which she helps to plan, reviewing scientific research proposals as a member of an Arthritis Foundation advisory group, and sharing the patient community’s concerns about medications before the U.S. Food and Drug Administration (FDA) as a member of the Special Ambassador FDA Committee.
Staci’s commitment to advocacy has not gone unnoticed. She has developed strong relationships with legislators including Rep. Mike Pompeo (R-KS), who joined the Congressional Arthritis Caucus, co-sponsored the Ensuring Children’s Access to Specialty Care Act (HR 1859) and invited Staci to join him for a private party at a local pub to watch the Wichita State Shockers play in the NCAA men’s basketball tournament.
“Advocacy gives us a voice over a disease that so often takes so much from our lives,” said Staci. “With advocacy we have hope.”
At only 11- years-old, Graci Diggs lives with juvenile rheumatoid arthritis and works hard to be a voice for kids who have arthritis. She has been involved in many Arthritis Foundation events like theAdvocacy Summit, Cabin Fever, JA family days, Jingle Bell Run for which she served as the 2015 National Youth Honoree and the National JA Conference in Orlando. She encourages other kids living with arthritis to speak up so their voices are heard, oftentimes reminding them that legislators are people, just like them.
格雷西在密苏里州逐步治疗法案的通过中发挥了重要作用。她不认识陌生人，在一次当地的社区晚宴上偶然遇到了州众议员大卫·伍德(David Wood)，她雄辩地讲述了自己的关节炎故事，解释说她当时坐在轮椅上，因为她的医疗保险公司没有批准她的儿科风湿病医生开的药物。州众议员伍德被她的故事深深打动，邀请格雷西作为他的客人在国会大厦度过一天。格雷西做了额外的努力，邀请她的同学参加庆祝活动。想象一下，走在密苏里州的国会大厦里，看到格雷西和她的20个同学，都穿着相配的t恤，为这项法案进行宣传。她给我留下了深刻的印象。
Graci also testified twice during the spring legislative session on the step therapy bill. Her testimony was so powerful that the opposition refused to testify. The sponsor of the bill, Rep. Denny Hoskins (R-MO), got to know Graci and her family very well. He would call the Diggs family before a vote, letting them know what was happening and to see if they had any questions.
Rep. Hoskins had this to say about Graci, “She is a ball of fire and easily wins over the hearts of everyone that listens to her story. She has a ready smile and works through her pain and illness to help others.” The bill was ultimately signed into law by Governor Jay Nixon (D-MO).
Graci and her mom, Anna, also made a splash on national television. In 2016, they appeared on the CBS television show, Sunday Morning. Interviewed by Erin Moriarity, Graci and Anna talked about the expense of medications and the benefits Graci has experienced because of them.
Staci and Graci are ardent advocates for the arthritis community, using their voices to affect meaningful change and inspire those around them to become Advocates. You can meet Staci and Graci, and learn how to use your voice and arthritis story at the 2017 Advocacy Summit, March 6-7 in Washington, DC.Learn more about the Advocacy Summit.
Thank you for all your work to pass legislation!
Every time I get one of your emails all it talks about is advocacy for RA what about us with Osteoarthritis. I know that everyone has this to some degree. But what about us who have been living with it from our mid 40’s and every year get progressively worse?. I am 57 years old. I started with is autoimmune diseases since I was in my mid 30’s, every year of my life since I was 25 when a nurse and I lifted a patient and I popped a disk and tore the mucle and tendons. Osteoarthritis got into my spine, hips, knees, feet, neck, shoulders, elbows and hands. There is no treatment to help this debilitating disease other than massive amounts of opioids which have their own complications.I can no longer do everyday cleaning or cooking, I can’t ride for extended periods of time. I can’t hold a book or crochet, which are two of my favorite things to do. Eventually I will end up in a wheelchair and then bed ridden I fight the pain everyday to stay out of the wheelchair. But is is getting harder and harder to do. My doctors have done all they can and I was just told that surgery is not an option for me. All I hear about is RA and the strides you are making for those afflicted with this autoimmune diseases, but osteoarthritis has been around a lot longer and we just have to wait til someone famous get it for something to be done about it.