EXAMPLE ADVOCACY LETTER #1 – by Jeanie Ready
Subject: Request for Proclamation for Rheumatoid Awareness Day
Dear Honorable [Mayor], [Councilmembers], and [City Managers]:
My name is _______________ and I have resided in the _______________ area for over twenty years. I am a former litigation paralegal and worked for more than fifteen years for law firms representing commercial construction clients in the _______________ area…a very demanding, physical, and rewarding career. In 1997, I was diagnosed with Rheumatoid Arthritis, a severe and debilitating systemic disease for which there is no cure. I was able to maintain my career for several years, while raising two children and also stepping into public service as an elected councilmember (2007-09). However, the Rheumatoid Disease eventually became extremely aggressive and I no longer responded to the available treatments. In 2009, I had to resign from my career and from public service due to the severity of the disease progression. I have been on full social security disability since 2010.
While I continue to struggle daily with this relentless disease, I have turned my passion for politics and public service into advocating for increased awareness, education, access to treatment, research and, ultimately, a cure for Rheumatoid Disease. I am an advocate for a wonderful patient-based, non-profit organization called The Rheumatoid Patient Foundation (RPF). Please follow the link below (rheum4us.org) for more information about the RPF and its goals. Further, just this week, the RPF announced the establishment of the first-ever awareness day for this underestimated chronic illness, known as rheumatoid disease or rheumatoid arthritis. The inaugural Rheumatoid Awareness Day will be held February 2, 2013. Please see the link below to the official Press Release issued on January 22, 2013.
I hereby request that an item be placed on the next available regular meeting agenda that the City of _______________ issue a proclamation officially recognizing February 2nd as Rheumatoid Awareness Day. Of course, I understand if this matter cannot be addressed prior to February 2, 2013, but the earliest available opportunity to present this request to the council is greatly appreciated as we are in dire need of immediate attention to this serious health matter affecting more than a million people in our country. Further, to the extent the City of _______________ can show support for Rheumatoid Awareness Day, the links below provide access to more information and resources. Also, I would be happy to meet with one or more of you if you would like additional information.
Thank you for your prompt and courteous attention to this very important matter. I look forward to hearing from you with regard to this request. Please feel free to contact me at the address and phone number below.
Rheumatoid Patient Foundation website: https://rheum4us.org/
Rheumatoid Awareness Day press release: https://rheum4us.org/press-release-rheumatoid-arthritis-awareness-day/
EXAMPLE ADVOCACY LETTER #2 - by a volunteer
I want to share this exciting news with you.
The Rheumatoid Patient Foundation (RPF - https://rheum4us.org) has announced the establishment of the first-ever awareness day for a severely underestimated chronic illness known as rheumatoid disease or rheumatoid arthritis. The inaugural Rheumatoid Awareness Day will be held February 2, 2013 - a carefully chosen date. Although the disease affects about 2 million Americans, creates significant morbidity and mortality, and has no known cure, there has never before been a day set aside to promote education and awareness.
The establishment of Rheumatoid Awareness Day is significant for a number of reasons:
- Awareness will help improve much needed funding for crucial research toward effective treatments and a cure (currently, rheumatoid arthritis research receives only 8% of government funding per patient of comparable diseases).
- Increased education will aid early diagnosis and treatment, which is crucial in order for patients to have the best chance at remission; the current remission rate is only about 6%.
- This event highlights the increasing role that patients play in their own healthcare and how patient communities can give themselves a voice to bring about positive change.
You can find additional information and resources in the attached press release.
EXAMPLE ADVOCACY LETTER #3 - by Janette Sands
Dear Congressman Garrett,
I would first like to thank you and your staff who work in Washington DC and in your other offices for the hard work you all have been doing. As part of your constituency that votes for you and supports you, I understand many of the hard issues you deal with on a daily basis, and I thank you for your representation.
This letter I’m writing you today is very personal to me and many in your constituency, please read the press release I’m including below, which is representing Rheumatoid Disease; but first I would like to explain to you how this disease can change lives, affect the family core, cause severe changes in a family’s socio-economic level and even destroy a family in a matter of months.
This disease has no cure. It’s a progressive disease that attacks organs and joints. Mine has never gone into remission, and about 94% of the people who struggle with it every day will never see remission. Sadly, it is misnamed (referred to as rheumatoid arthritis) and people are not aware of how disabling this disease is. The facts are in the press release I’m sending you; I would like to share with you briefly, my story.
At the age of 25 I gave birth to my first and only child. She was healthy and is now a nurse. The reason she chose to go into the medical field is due to what she was exposed to while growing up. I ended up being a single mom and she was always by my side. Two months after giving birth to my daughter I started experiencing disabling pain in my eye. After visiting several doctors without any relief, a friend suggested I go to a teaching hospital. I waited several months for the appointment. I was unable to drive due to the pain, I was unable to see with lights on, and I was photophobic. The day finally came; I was going to a specialist who might help. While this new young eye doctor reviewed my case he looked at me and said, “Do your hands hurt?” Imagine my surprise, I’m going to this well-known facility for my eye and he asks about my hands. “No” I responded, at this point my hands didn’t hurt only my eye. He diagnosed me with Rheumatoid Arthritis and started treatment with prednisone.
I can begin to tell you the rest of my journey, but it’s too long and I need to get straight to the point. This Rheumatoid Arthritis attacked my heart and calcified it, I ended up at another fine institution for a 10 hour surgery where they chipped my egg shell calcification away from my heart. It is called a Pericardiectomy: the removal of the sac around my heart that is supposed to protect it, but in my case it was squeezing the life from my heart. I now have a dual chamber pacemaker due to Sick Sinus Node Syndrome which was due to the damaging effects of the calcification around my heart. I lost eyesight in my left eye due to the inflammation and demyelization of my optic nerve. My wrist is fused; I have 6 screws in my right ankle to fuse the foot joint. My feet no longer carry me far, maybe a 100 yards in a day. I suffer chronic infections almost all year long.
By now I hope you understand what I’m trying to say, Rheumatoid Arthritis isn’t Grandma’s disfigured hands. It attacks mostly women in their childbearing years. For me it was after my first child. I couldn’t have any more due to the disease. This disease took an active 25 year old executive, working for a National Cosmetic Company and within 5 years I had to find another job that was less taxing on my body. Within 15 years I became wheelchair dependent, mostly fighting pain, fevers and infections due to side effects of the medications I take for Rheumatoid Arthritis. I cannot live the life I want; I am extremely limited to most activities. I will be fighting this disease with my Primary Care Physician and my 8 Specialists and counting. I’ve been on disability since 2003 and am struggling to be a positive member of society. I don’t want to be in this position; it has been a lifetime fight for me. I’m 52, I’ve had RA for 27 years, and fought a good fight with expensive medications that don’t always work and come with a long list of side effects.
Now that you have a glimpse of my story, please go to the link below read the press release of a young organization named The Rheumatoid Patient Foundation. This is a grassroots effort of RA Patients and our leader a true warrior fighting to educate our cause. I hope and pray you begin to understand our fight and see how draining, painful and expensive this Rheumatoid Arthritis is on patients, their family’s economic status, our countries healthcare system and our lives.