CMP RESOURCES - CMP AWARENESS DAY

  
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CMP AWARENESS DAY
CMP RESOURCES Awareness

The idea of Awareness Day began in 1992. The date of May 12th date was chosen to honor the birthday of Florence Nightingale, the English army nurse who was a pioneer of the Red Cross Movement. Nightingale was virtually bedridden with a painful and fatiguing illness resembling Fibromyalgia (FM), yet went on to inspiring accomplishments, including the founding of the first School of Nursing.

Now Awareness Day activities take place worldwide in an effort to increase awareness of FM, DMP and other painful medical conditions. To allow patients and organizations to educate the general public, healthcare professionals and government officials. One of the most difficult aspects of having CMP is that most of the symptoms are invisible, which makes it hard for others to understand what living with this debilitating illness is really like. That's one of the reasons that Awareness Day is so important.


Remember...

No one expects you to do a million things, but DO try to write at least one letter to your Congressperson. Then if you're up to it, choose one of the other suggestions listed above (or come up with something new!) that suits you best and that you are best able to accomplish. Let us know what you are doing to make others more aware of CMP on May 12th!

Thank you for helping to increase awareness about CMP!



How To Raise Awareness:

  • Write, call or visit your Congressional representatives. If you don't know who they are or how to contact them, call your local voter registration office or League of Women Voters, the Capitol switchboard at (202)-224-3121 or visit websites such as www.congress.org.

  • Organize a support group member project.

  • Take copies of your advocacy letter to your support group meeting. Other group members can either copy the letter by hand or use a photocopy of your letter.

  • Make and bring copies of the enclosed CMP Fact Sheet, which explains what CMP is, who gets it and how it's treated.

  • Ask each group member to bring at least one envelope and one first-class stamp to the meeting.

  • Have each person place the letter and the CMP Fact Sheet in an addressed envelope, seal it, stamp it and then mail all the letters at once.

  • Start this process early! You want to have lots of time for your elected officials to receive your letters.


Inform The General Public

  • Set up a display in your local library for the week of May 12th or the month of May. This can be done by the librarian with your suggestions on what information should be included in the display.

  • If members of your support group can manage some time at the mall, you may wish to set up a display there.

  • Consider asking your place of worship to include a notice about the significance of May 12th in its worship material.

  • Place a classified ad in your local newspaper.


Alert The Media

  • Contact the health reporters at your local TV and radio stations, newspapers and magazines regarding CMP and Awareness Day 2008.

  • Mail your letters or call the reporters early. Program directors often plan ahead and since May is a TV and radio ratings month, they are busy preparing feature stories now for broadcast in May.

  • Designate someone as your group's spokesperson, so the media has a contact for stories.


Basics Of Letter Writing

Who To Write:

  • Write 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. 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 CMP. 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" CMP is - simply print out the CMP fact sheet and attach it to your letter. (Click here for the fact sheet.)

  • Describe how CMP 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 CMP, including the time you struggled without the benefit of a diagnosis.

  • How much money and how many doctors it took before you got 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 CMP treatments.

  • Has CMP affected your employment status? Do you consider yourself to be disabled by CMP (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 CMP 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 CMP.

  • Mention if there are other members in your family, especially children, who are also struggling with the symptoms of CMP.

Finishing Touches

  • Express 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 officials 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 of that too! CMP RESOURCES 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 CMP. This is a world-wide, team approach to advocacy, and your input will help ensure success.

Please feel free to make multiple copies of the CMP Fact Sheet. No reprint permission is required for the use of this document.



If Writing Is Difficult

  • Ask someone to write the letter for you or dictate a letter to someone that you can sign.

  • Make a phone call. One phone call represents 150 others that support your issue. Ask your U.S. Senators or Representative to support increased funding for CMP research. Call your Senators or Representative and ask to speak to the Health Legislative Aide (each Congressperson has local offices in your state which may save you a long-distance phone call to their Washington, DC office). To find the phone numbers, look in the local phone book or call the Capitol switchboard at (202)-224-3121.

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Last Modified: 12/31/69 07:00 ET