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|THE BASICS of Letter Writing by NFA !!! w/ attachments|
|Written by auggie|
|04 May 2008|
LETTER STYLE: Personal and individualized. I have also added their "Fact Sheet" (which is what I am blasing out on Wednesday to Program Directors -- Radio & TV) -- luv Auggie
For those of you who want to write YOUR STORY -- to polticians, newspapers, etc. These are GOOG guidleines from National Fibromyalgia Association. Your story - your path - your experinece voiced is powerful - Keep up the great work! I am posting 2 other copies 1.) The PR awareness letter I created and 2.) A letter you may or may not desire to use.
National Fibromyalgia Association (NFA) is a non-profit [501 (c) (3)] organization. www.FMaware.org (714) 921-0150=====================================================
The Basics of Letter WritingWho to WriteWrite to your local or state officials. If you don't know the names of your Senators, Representatives or state Governor, call your local voter registration office or check our Advocacy Links page. Letters should be addressed, "The Honorable name, title (U.S. Senator, House Representative, Governor, etc.)." What To Say ... keep it to one page!Introduce yourself as a person with fibromyalgia.If you wish, you can indicate your age, sex, marital status, number of children you have (if any) and whatever else you feel may be pertinent to depicting you in your situation. You don't need to go on at length about "what" fibromyalgia is--simply print out the Fibromyalgia Fact Sheet (in PDF format) and attach it to your letter. Describe how fibromyalgia has negatively impacted your life.Here are some points you may want to address. Remember, this section should be brief—one to two paragraphs long. • How many years you have had the syndrome, including the time you hobbled along without the benefit of a diagnosis. • How much money and how many doctors it took you to get a diagnosis. • The difficulties you have had with finding a knowledgeable and compassionate physician to treat you (dollars wasted, number of wrong diagnoses or inappropriate surgeries/treatments, and mention one of the most insulting comments or humiliating situations you had to endure during this troublesome time). • The number of various treatments you have tried and how ineffective they have been. • Any problems you have had with your insurance company not paying for your fibromyalgia treatments. • Has fibromyalgia affected your employment status? Do you consider yourself to be disabled by fibromyalgia (fully or partially)? And if so, are you receiving social security disability benefits or other forms of government compensation? Have you applied for financial assistance but been turned down? • The impact that fibromyalgia has had on your family life: Has it cost you a marriage? Does it impair your ability to function as a parent?• Have you dropped out of sight "socially" due to lack of energy and uncontrollable pain? Social isolation is a nasty enemy to people who suffer daily from chronic illnesses such as fibromyalgia! • Mention if there are other members in your family, especially children, who are struggling with the symptoms of fibromyalgia. Finishing TouchesExpress your thanks.Always be polite and thank your official for taking the time to read your letter. Let him or her know that any help that they can offer would be greatly appreciated. You can also state that you would be eager to hear about any suggestions that they could provide you.Sign off.Use Sincerely, Kindest regards, Yours truly, etc. Then sign your name. You may send out a neat photocopy of the body of your letter (if you don't have access to a word processor and printer), but please personally sign each copy that you send out! Always include your mailing address. Government officals are obliged to respond to your inquiry as long as you provide your address. Make copies of everything.Besides making a copy of your letter for your own files, PLEASE send us a copy as well. If you receive a response from your elected official, send us a copy too! Why? Fibromyalgia Network will continue to work with patients to keep the advocacy efforts rolling ... but it would be of great help to us to know which elected officials have expressed an interest in fibromyalgia. Then we can send letters to other patients living in that particular official's voting district or state, encouraging these people to step up their letter-writing efforts. This is a nation-wide, team approach to advocacy, and your input will help ensure success. If possible, follow-up meetings with interested elected officials, or their staff members, will be attempted by Fibromyalgia Network to add more political clout to the letter that you have already written; sort of like a one-two punch! Please feel free to make multiple copies of the Fibromyalgia Fact Sheet. No reprint permission is required for the use of this document
============================ About Fibromyalgia FACTSFibromyalgia (pronounced fy-bro-my-AL-ja) is a complex chronic pain disorder that affects an estimated 10 million Americans and approximately 3-6% of the population worldwide. While it occurs most often in women, it strikes men and children, and all ethnic backgrounds. For those with severe symptoms, fibromyalgia (FM) can be extremely debilitating and interfere with basic daily activities. Diagnosis: o The FM diagnostic criteria, established by the American College of Rheumatology (ACR) in 1990, includes a history of widespread pain in all four quadrants of the body for a minimum duration of three months, and pain in at least 11 of the 18 designated tender points when a specified amount of pressure is applied. o Since people with FM tend to look healthy and conventional tests are typically normal, a physician knowledgeable about the disorder is necessary to make a diagnosis. o Physicians should rule out other causes of the symptoms before making a diagnosis of fibromyalgia. Symptoms: o Although chronic, widespread body pain is the primary symptom of fibromyalgia, a variety of other symptoms are common in FM patients. Symptoms include: moderate to severe fatigue, sleep disorders, problems with cognitive functioning, IBS, headaches and migraines, anxiety and depression, and environmental sensitivities. o Research has documented neuroendocrine physiological abnormalities that may contribute to the symptoms. Causes: o Recent research has suggested a genetic component. The disorder is often seen in families, among siblings or mothers and their children. o Fibromyalgia often occurs following a physical trauma, such as an acute illness or injury, which may act as a “trigger” in the development of the disorder. o Increasing attention is being devoted to the central nervous system as the underlying mechanism of FM. Recent studies have suggested that FM patients have generalized disturbance in pain processing and an amplified response to stimuli that would not ordinarily be painful in healthy individuals. Treatment: o Since there is no known cure for FM, treatment focuses on relieving symptoms and improving function. o A variety of prescription medications are often used to reduce pain levels and improve sleep. On June 21, 2007, the U.S. Food and Drug Administration approved Lyrica (pregabalin) as the first drug to treat fibromyalgia. o Alternative therapies, such as massage, myofasical release, acupuncture, chiropractic, herbal supplements and yoga, can be effective tools in managing FM symptoms. o Increasing rest, pacing activities, reducing stress, practicing relaxation and improving nutrition can help minimize symptoms and improve quality of life. National Fibromyalgia Association (NFA) is a non-profit [501 (c) (3)] organization www.FMaware.org (714) 921-0150
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