FMS COMMUNITY NEWSLETTER #83

 


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FMS Community Newsletter #83



FMS Community Website Special Edition - Fibromyalgia Awareness Day
Special Edition: Awareness Day Events and Ways to Help
Hello;

Fibromyalgia Awareness day is fast approaching. We wanted to send out this special edition that will focus on upcoming events around the world so you can plan ahead, book events and so on.
We will touch on ways you can educate those around you, events you can attend and various ways you can help us and other organizations stay involved.
You can attend rallies, write to your government, give a dollar to a charity, write the local media or just wear a button that will make people you come in contact with stop and think. Whatever you do, no matter how big, or how small, will help to educate those who may be in a position to help with research dollars and education of our health care professionals.
It's our big day to shine, to be heard, so lets make the best of it.
Jane Kohler
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Do you shop for books and other items on Amazon.com? If so you have a painless, no cost to you way to help keep our organization alive and well. The next time you want to buy a book, or a vacuum cleaner from Amazon, go to http://fmscommunity.com and click on the Amazon.com link on our home page. Once you make your purchase, Amazon will give our organization a small fee just for you using our link to do your shopping. Shopping through us will not add any extra cost to your order.
So, please think of us as you shop online. These funds allow us to continue the newsletter, our doctor referral service and more.

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The NFA and Trillusion has put together a ground breaking film called "Living With Fibromyalgia" and a planned screening of the film all around the world.

Individuals are invited to get the packet and a copy of the film so they can schedule their own screening in their town.
The premier is on March 22, 2007. 7:00 pm
at Landmark Hilcrest Cinemas at 3965 5th Ave. in San Diego, California. The showing is free. http://www.livingwithfm.com Contact: Shelly Hausen at 714/921-0150
Other viewings around the country are being scheduled by individuals and support groups, check the NFA website for updates and new locations.

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One-Day 2007 FAME Seminar– Managing Chronic Pain - Fullerton CA
All FM patients, care providers, and advocates are invited to learn about the newest pain management and treatment advances at the National Fibromyalgia Association’s one-day FAME (Fibromyalgia Awareness Means Everything) seminar, set for May 12.

Theme: Managing Chronic Pain

Date and Time: May 12, 2007 7:30 am to 5:00 pm

Location: Orange County, CA – at California State University, Fullerton

Keynote Speaker: Dr. Dennis Turk, Professor of Anesthesiology & Pain Research, and Director of the Fibromyalgia Research Center at the University of Washington.

Features: A full schedule of educational and scientific presentations by a faculty of leading experts in Fibromyalgia pain management, clinical treatment, and self-care.

Plus a ‘Wellness Fair’: Meet product & service exhibitors and vendors.

Cost: $35 for those who register by April 1, 2007. Covers lunch, workshops, wellness fair.

To Register Online and For More Information Starting March 1: Go to http://www.FMaware.org

Or Call the NFA: at 714-921-0150

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Albany, Georgia screening of the film, Living With FM
Friday, May 11 2007 02:00 PM FREE, RSVP required
Go here http://livingwithfm.bravenewtheaters.com/screening/show/9109-albany to reserve your seat now.

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The 2007 Midwestern Fibromyalgia, Chronic Fatigue Syndrome Conference
Conference for: Patients, family members, employers of patients, professionals (physicians, allied health care providers, attornyes, health care students, social service providers)

May 18-20, 2007 Matteson, IL
Registration fee is $150 per person (goes up after April 1, 2007).
Opening night gala fee is $100 (attendance is optional).

The goal of this three-day event is to help educate people about various areas of FMS/CFS, including research, treatments, exercise and physical therapy approaches, and disability issues. A sampling of the speaker lineup includes: Muhammad Yunus, M.D., Michael Rosner, M.D., Dianne Adams, M.P.H., Jacob Teitelbaum, M.D., Hal Blatman, M.D., Derek Miller, D.O., Joan Shaver, Ph.D., R.N., Steven Krafchick, Esq., and Leonard Jason, Ph.D.

A PDF registration booklet can be downloaded at: http://www.fibrocop.org/RegistrationBrochure.pdf

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What Can I do if I can not afford to attend seminars or am unable to travel to rallies?

One person can make a difference with little or no money, or energy expended. There are many ways you can help the cause from home, or just by going to the grocery store.
* Many organizations offer flyers about Fibro. Ask for some and leave them around town as you go about your errands. Put them on grocery store bulletin boards, leave them in doctor and dentist offices, vetrinary offices and more. Heck, leave one at your local gas station, you never know where you might touch someone.
* Email, call or write your local TV stations, radio stations and newspapers. Let them know awareness day is coming up. Include a brief description of the disease, your story and suggest they do a story on it to honor the day, ask them to find experts to interview to help the cause. Let friends and family know what you are doing and ask them to contact the same sources so they get the message. Note* Be brief, calm and professional in your correspondence, these are busy people who are tossed story ideas all day, they react better to a well thought out, short and to the point letter than they would to a long emotional ramble.
* Write to your local, state and national government. Contact representatives, senators, congressmen and more. Remind them that you are out there. Educate them on how Fibro has taken over your life. Ask them to dedicate more money to research, or to revamp the archaic disability benefit system so people can get benefits faster and easier. *Note. Many of the top FM organizations and websites have sample letter templates that you can just print off and sign or rewrite to make more personal, and send to those in charge.
* Contact your local library. Many will set up special displays if asked. Ask them to put all information they have on Fibro in a special display along with signs announcing National Fibromyalgia Awareness Day. These displays can include books, videos, pamphlets, information about local support groups, websites where you can find information and much much more.
* Buy yourself a button or pin. Many organizations offer these items for sale. Make sure you have on a pin or button when you leave the house. It makes people ask questions. (Short story here about wearing a pin, It will be short, honest.) I strapped on one of my Fibromyalgia Hurts - Educate yourself pins on my way to shop at a local discount store. A woman in the cleaning supply aisle kept looking at me. She finally asked me what was Fibromyalgia. I gave her a short rundown of sypmtoms and her jaw dropped. She said that sounded just like what her mother had been telling her. She was at her wits end and did not know what to do for her mother. I gave her the name of my doctor and her mother made an appointment. She called me about 11 months later, I had all but forgotten about her. She said her mom was on medication and was sleeping better, her pain level was down and she was so happy she ran into me that day. You never know just when that one button can help someone.

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I want to write a letter to government officials. What should I say?

Always make your letter personal. Never start with Dear Sir or Madam. Address the person you are contacting with their name and with proper respect. Such as;
To: Honorable (name here)

Make sure you are willing to stand behind your comments. Always supply your complete name, address, phone number, email address and Fax number.

Start out factual. Tell them the name of your disorder, how long you have had it. Tell them how many years you suffered before someone made a diagnosis, pointing out how uneducated our medical professionals can be in this area.

Tell them how many doctors and other health care professionals you had to see before you received a diagnosis.

Feel free to list humiliating experiences when seeking a diagnosis.

Tell them the impact this disease has had on your career, family and social life. Let them know if you held down a full time job while raising kids. Let them know that you also played tennis, or hiked or ran in marathons. Tell them if you used to do charity work that you can no longer do. Make them understand how active and vital you were, then make it clear that you can no longer live that life.

Let them know if the disease cost you a marriage or relationship.

Let them know if you have, or are currently trying to gain disability benefits so you can eat and buy medication. Tell them of any problems you have encountered with your social security office, such as having benefits denied.

Tell them if any of your children or siblings appear to show signs of the disease and how you would hope our government and medical professionals would do more to ensure that they do not have to go through what you have gone through in the future.

Sign your letter respectfully.

Print it off on your computer if you have this ability and send a printed copy with a personalized signature. (Make sure you keep a copy for yourself so you do not have do redo it if you want to send a letter to another official.

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You have written that letter. Where should you send it?

Go to http://www.senate.gov for contact information for all U.S. Senators.

Go to http://www.house.gov for contact information for all U.S. Representatives.

Go to http://www.nih.gov

Some important names in government related health care issues.

Elias Zerhouni, M.D. Director, National Institutes of Health
Building 1, Shannon Bldg RM 126 1 Center Drive, MSC 0148 Bethesda, MD 20892-0148 E-mail: ez26y@nih.gov
Phone: 301-496-2433

Stephen Katz, M.D., Ph.D.
Director, NIAMS (National Institute of Arthritis, Musculoskelatal, and Skin Diseases)
Building 31, Room 4C-32 31 Center Drive, MSC 2350
Bethesda, MD 20892-2350 E-mail: katzs@mail.nih.gov
Phone: 301-496-8190 Fax: 301-480-2814

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