|
|
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.
|
|