Several people in our community have shared stories with RPF recently about their own advocacy efforts and contact they've had with government officials in light of the newly established Rheumatoid Awareness Day. We want to share their inspiring stories as encouragement to others who want to join in advancing the cause of rheumatoid patients through advocacy activities. Click here for some basic tips about patient advocacy or here to see example letters.
My favorite quote is by Margaret Mead, “Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it is the only thing that ever has.” Therefore, I live my life being involved in things in my community that I hope are making a difference – alcohol and drug abuse prevention, neighborhood work and kid-serving organizations.
Being diagnosed with rheumatoid disease (RD) was a complete surprise to me, as the onset came quickly after a surgery and was fast and furious. I found that some of the things I loved being involved in I had to give up, but the connections made through that involvement set the stage for me to be able to promote awareness of rheumatoid disease.
I was thrilled when I saw the press release about Rheumatoid Awareness Day! I knew this was an opportunity to start a conversation about this disease in Central Wisconsin. Because it is one designated day, I decided that a proclamation by the Mayor of Wausau was the best way to start. I looked online for other proclamations to see how they were worded. I then went to the RPF website and RAWarrior website to pull out the most important pieces of information on rheumatoid disease and put those golden nuggets in the proclamation format.
With the “work” already done, I contacted the Mayor’s secretary via email and asked her what is necessary for the Mayor to sign a proclamation. I already had an established relationship with both her and the Mayor from prior neighborhood work, but you can make this type of contact without a prior relationship, as well. She explained to me that proclamations are signed in by the Mayor at a city council meeting – even better than I had hoped! She put it on the next council agenda, February 12, 2013 and said I should plan on being there for him to read it and sign it! She was grateful for the fact that all she had to do was print the proclamation on the paper they use for them. Notice the date was after February 2nd? I didn’t let that discourage me – this is about awareness and though the timing wasn’t perfect, it was a huge step forward.
David Biundo and I were able to attend the meeting and were called forward when the Mayor read the proclamation. There were some pretty surprised faces in the crowd when they heard some of the information about RD. We received a beautiful copy of the proclamation and from 2013 on, in the City of Wausau, WI, February 2nd is declared as Rheumatoid Awareness Day!
Here is the actual text of the proclamation:
Whereas Rheumatoid Disease (also known as rheumatoid Arthritis) affects 1% of the population; and
Whereas RD is a progressive, destructive disease frequently leading to disability; and
Whereas RD is a disease in which immune cells attack joints and organs, including heart and lungs; and
Whereas almost 2/3 of patients have a 20% response or less to treatments; and
Whereas no cure is known; and
Whereas the United States spends a fraction on RD research of what is spent on rarer diseases with similar mortality rates; and
Whereas early diagnosis is critical in preventing irreparable damage to joints and other tissue; and
Whereas the Rheumatoid Patient Foundation has formed to create awareness, generate support, provide advocacy and push for research to find a cure; and
Whereas the Rheumatoid Patient Foundation has declared February 2 as Rheumatoid Awareness Day – a day to bring Rheumatoid Disease out of the shadows;
Now, Therefore, I, James Tipple, Mayor of the City of Wausau, do hereby proclaim February 2, 2013 and every February 2 thereafter,
Rheumatoid Awareness Day
Throughout the city of Wausau, and I commend this observance to all of our citizens.