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Abbott Northwestern Hospital's Arthritis & Fibromyalgia Care Program and the Fibromyalgia Management Association will join a national effort to educate the public about this life-altering condition. Governor Jesse Ventura has proclaimed May 12 as Fibromyalgia Awareness Day in Minnesota. Some of the events in Minnesota are: -- A Fibromyalgia Helpline from 8:30 a.m. to 5 p.m. on May 12. Specialized counselors and nurses will be available to answer questions, provide information and help callers access community Fibromyalgia resources. The number is 800-877-7878.
-- An authority on auto-immune and immune deficiency disorders and regarded
nationally as an expert in treating Fibromyalgia, Dr. Darryl See,
will speak between noon to 3 p.m. on Saturday, May 8 at the Thunderbird
Motel in Bloomington.
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Index
to 1999 Advocacy
Jesse "the Governor" Ventura strong-arms fibromyalgia ~
Minnesota Fibromyalgia Awareness Day ~ Abbott Northwestern
Hospital: Fibromyalgia Sufferers In Minnesota Get Extra Help This Month
Becoming Politically Active: FMS/CFS Advocacy & Activism: Decent, fair treatment, and public laws and policies that protect you don't just happen. You can help fight for our future! We are in a fight for survival. But if we stand together -- we can and we will prevail. The solution depends on you -- on your voice, your ideas, your energies, your spirit. The cost is minimal ~ all you will need is paper, a pen, and a few stamps. It will take a short amount of your valuable time. You can have a tremendous influence on our future if you will only take the time. Write a letter to your national government officials. You have 2 senators and a congressperson. Start with these. These are the people who represent you, you will carry the most weight with them. Next write to the Senate Appropriations subcommittee: Health and Human Services. This is the committee that drafts the bills for the budget. The letters you write are very significant. Many legislators believe that your one letter represents the views of at least 100 other voters who did not take the time to express their opinion.Your Senator or Representative may not see your letter personally. But you can be sure that a legislative assistant is carefully reading the mail to learn what the voters back home are thinking.
State a specific issue. (Such as more money for fibromyalgia research) Just a few paragraghs at the most, keep your letter to only one page! Your letter is more apt to be read if it is kept short. Cover only one topic each time you write. The letter you compose and write yourself carries the most weight. Type your letter if possible. Include your name andaddress, and ask for an answer. Ask your legislator to state his views on the issue. If you can, include copies of articles that support your position & quote experts on the topic. You should be firm, but courteous. Anger and sarcasm will not win any points with your reader. Try to write a follow-up letter. Say thanks. Most people write only when they disagree with the way their legislator votes. It's important to let them know you appreciate a favorable vote, too. How to Address your Letters:
Make your voice heard by writing and calling your local, state, and national government officials.
For Government Representatives: R.E.S.C.I.N.D.'s Sample Letter CFIDS Association of America's Sample Letter Zoe's FM Letter to Representative
R.E.S.C.I.N.D.'S Sample Letter for the Media Kathleen Houghton's Sample Letter to Media
Writing Effective Letters To Legislators On Chronic Pain Issues
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FMS/CFS Awareness Day Events |
| National
Fibromyalgia Awareness Campaign
May 12th Fibromyalgia Awareness
Day New! FM Aware Newsletter Previous & future FMS Awareness Campaigns NFAC is a non-profit organization with a unique approach to FMS awareness!
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| Rally in
Washington, D.C.! for CFIDS/ ME / FMS/ MCS/ GWS AWARENESS Sunday, MAY 9, 1999 12 noon to 3:30 pm The U.S. Capitol Building This rally is being held to let our representatives in Washington know about these diseases and their impact on citizens and their families. Those attending are also encouraged to stay for the CFIDS Association of America's Annual May 12th Lobbying Days, which this year will be held May 11 and May 12. Speakers will also be on hand to discuss the impact of the disease on entire families, including the private and public disability insurance needs of adults that are simply not being met.
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| Has your
state legislature declared May 12th
CFIDS Awareness
Day?
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| WECAN Awareness
Day
Banner of Hope The CFIDS/ME/FMS/GWS Banner of Hope will be available for viewing in Washington, D.C. next week in conjunction with the May 12th Lobby Days. We invite everyone who will be in DC during this time to come by and see this incredible banner display, which is 280 feet long. It represents hundreds of thousands of men, women, and children worldwide -- all sufferers from invisible diseases -- and illustrates how these insidious illnesses affect everyone's quality of life. This banner was handmade by people with CFIDS/ME/FMS/MCS and other similar illnesses, some so very ill that they required the help of others to create a piece for them. The banner will preview on Sunday, May 9th, at the Rally on the East Side of the U.S. Capitol Building, near the House of Representatives entrance between 12:00 noon and 3:30 p.m. It will then be displayed on Lobby Day, May 12th, from 11 a.m. - 1 p.m. on the West Front Terrace of the Capitol, by the Reflection Pond. Please come see for yourself this awe-inspiring banner. It represents people from around the world; ...your mother, father, child...favorite aunt or uncle, neighbor, friend or co-workers...maybe even you.
Contact:
or Sandra Grier
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| May
12th Mailing List
The purpose of this list is to serve as a communication link for members of the "May 12th Coalition", a group of people representing mostly patients with CFIDS/CFS/M.E., Fibromyalgia, and R.E.D.D. (RNase-L Enzyme Dysfunction Disease), but also open to those with other neuro-immune-pain syndromes such as Post-Polio Syndrome, Gulf War Syndrome, Multiple Chemical Sensitivities, Lupus, and Multiple Sclerosis. May 12th is International CFIDS/M.E. Awareness Day, or in some places in the U.S. CFIDS/FMS day; or a day for recognizing the significance of the cluster of diseases that fall under the generalized umbrella of neuro-immune disorders. The May 12th Coalition will use the list to plan a national rally at the Capitol Building in Washington D.C. within a week of May 12th (the date to be decided), as well as to help plan local activities, letter-writing campaigns, media campaigns, etc. All interested in working on May 12th activities are welcome, but you will be asked to fill out a brief form providing information about your interests in the Coalition. Many thanks to Tom Hennessy for the original idea and years of effort in making May 12th an international awareness day for this silent pandemic of related disorders. -- Listowner Mary Schweitzer, mailto:schweit2@ix.netcom.com For more information, http://www.cfids-me.org/may12/
If a cause and cure are to be found for CFIDS/ ME/ FMS in the near future, government and medicine must be made fully aware of the scope of this illness. Despite the efforts of a number of dedicated groups and individuals, there are still vast pockets of ignorance and misunderstanding about CFIDS/ME. To this day, many patients run directly into a medical establishment that, in general, knows very little about this serious threat to human health. It is therefore crucial that all those affected by the illness make their voices heard, especially on May 12th of each year.
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| Fibromyalgia
Network's Advocacy Update
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| Fibromyalgia Awareness
Page
Stop the Pain of Ignorance
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| Fibro One FMS
Activism
Contacting Your
Representatives Take the FMS tobacco/environmental survey Scary Implications: Growing Fibromyalgia Crisis, you may be shocked by this article! Another shocking disclosure: misappropriation of CFIDS research funds!
Tiger Lady's Site & Disability Claims Assistance
The Fibromyalgia Advocate
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