‘Til Next Year?

So another International Fibromyalgia Awareness Day has passed…time to recover and take a breath – but what then? Are you going to wait until next year to promote awareness of FM?

From Fibro Daily:

purple-warrior-sandy-prenziThe efforts of Fibromyalgia Awareness Day shouldn’t be relegated to May 12th. Instead, they should infuse the whole calendar with the Fibro Warrior Spirit.

So short of storming the castle and scribbling all over accessible calendars, how do you infuse that Fibro Warrior Spirit into the days beyond May 12th?

French-castle-purpleWell, really…you should storm the castle.

Think of the castle as all the entities that resist Fibromyalgia, rolled into one, then storm it with your charm, determination, and wit. Organize the non-Fibro castle with a ferocity that makes a knight take notice! After all, this is your health we’re talking about. Your life. Don’t play proper!

tAG_129661Play strategically, with a smile. A Fibro Warrior smile.

By doing so, you’ll invoke change.

Ways to Strategically Invoke the Fibro Warrior Spirit:

1. Develop a social media presence.

Start a Facebook page and Twitter account that focuses on raising Fibro Awareness. Ask people you know or who are on your personal page to like and follow the cause, then spread the word.

To develop a strong following, you must consistently post relevant posts. The internet is FULL of these, so start researching and posting! A Fibro Warrior searches every nook and cranny for “bootie”.

My awareness campaign32. Start a Fibromyalgia group in your community.

Again, social media is going to play a huge part in this effort because you will organize meetings via the social media sites. Even if only one person responds to your meeting request posts, forge ahead!

To prepare for this meeting, take paper, pens, and highlighters for those who might not feel comfortable using technology to take notes. A Fibro Warrior always carries supplies.

Why do you need to take notes?

Because you are going to brainstorm ideas about how to publicize Fibro Awareness in your community and to do so, you need to keep that arch enemy Fibro Fog at bay.

A good way to start publicizing is by giving free Fibromyalgia presentations at local meeting spaces, such as the YMCA. Make a list of those types of places. Make sure to include:

  • gyms
  • spas
  • yoga studios

Focusing on beauty and health businesses makes sense, as their clientele are more attuned to wellness. Also, such businesses tend to be frequented by women, which is your target audience as more women are diagnosed with Fibromyalgia than men. However, don’t forget the men! Their pain remains severely unacknowledged.

At the very least, all presentations should feature an explanation on the history, diagnosis, and research of Fibromyalgia.

3. After brainstorming, approach local businesses about using their space to give a presentation on Fibromyalgia.

That means you also need to:

  • Ask if the business is willing to hang flyers prior to the event.My awareness campaign2
  • Ask the owners/employees/fitness instructors to make an announcement before each class/session they lead.
  • Make sure to network the right way! You want to let the public know when a business has helped your efforts. That means you should give them a public thanks by mentioning them on social media and in promotional materials.
  • Hit up as many businesses as possible to reach as many people as possible. You can use your Fibromyalgia group to divvy up presentation responsibilities—i.e., one person does the approaching, one does the presenting, one handles the promotions.

A victorious Fibro Warrior knows how to delegate and appreciate.

4. Use every endeavor—meetings, presentations, and interviews—to further the cause.

Make a sign-in sheet and request that people leave their name and Facebook/Twitter info. Prominently display your own contact info so people can like you on Facebook or follow you on Twitter.

Once you have the contact info, add them to your friends and keep them informed of all you are doing. The more people you tell, the more people will share.

Consider this info collection your Fibro Warrior battle cry.

5. Learn to write a press release. You can easily research this online.

After building substantial support and giving a few presentations, send out a press release about upcoming presentations to:

  • local TV station
  • local radio stations
  • Fibro websites and podcasts

Local media personalities are always looking for positive stories about the community. In the press release, include all the online success you have had plus the presentations you’ve given. Mention that you’d love to share more about your Fibro Warrior efforts over an interview.

If they say no, don’t let them off so easily. Contact them again, at a later date. A Fibro Warrior always keeps the target in sight.

6. Fight for Fibromyalgia legislation on a city, state, and national level.

(For USA) Check out government websites to see if the ones you are focusing on have released any proclamations about recognizing Fibromyalgia.

Also, a very handy map can be found at http://fmcpaware.org/resolutions-and-proclamations?sid=640

If you click on a state, it will reveal what fibromyalgia legislation the state has passed.

If your city/state doesn’t have any, it’s time to start:

  •  writing letters
  • writing emails
  • making phones calls

to government officials. You can find their names via search engines and government websites. Include any press releases and media coverage you have received. Politicians like numbers (surprise!) If you are making a positive wave in their community, they’ll want to hitch a ride.

Remain diligent on follow-through with the politicians you contact. So many efforts fail because of a lack of follow-through. Just because a contact don’t respond right away doesn’t equate to wasted efforts. You just have to outlast the politicians’ determination to ignore. Don’t get used to being ignored. Fibro Warriors stand tall and proud even in the face of adversity!

7. Breathe. Laugh. Live.

In order to succeed as a Fibro Warrior, you must live your life to the fullest.

Don’t let Fibromyalgia prevent you from doing that.

Enjoy a hot bath. A massage. Eat a luxurious meal. Nap. Spend time with family and friends. Work. Do yoga.

By pursuing activities outside of the Fibromyalgia realm, you will actually strengthen the Fibromyalgia realm. That’s because you’ll see it with a refreshed, renewed vision.

Remember: You are a Fibro Warrior, so invoke and change. Some people don’t even think you exist, but those people don’t know what’s about to hit them.

Purple_Warrior_by_AjarnNog

Make Fibromyalgia VISIBLE!

CARE & Make Fibromyalgia Visible would love to support you in creating a memorable International Fibromyalgia Awareness Day event in your community.  That’s where your efforts really make a difference.  FM events occur all through the month of May.

This year, the National Fibromyalgia and Chronic Pain Association (NFMCPA) pulled together all of the best tips and advice–plus tools, from the pros.  Putting on an event can be easier with a ready-made kit that includes a step-by-step check-off list and a Guide to Creating Local Fibromyalgia Awareness Events for more time-tested considerations.

It’s all free and ready to be sent to you!

FM Awareness Day activities (through NFMCPA) revolve around four topics have a special emphasis raising public FM awareness, not just awareness to those who have FM, their families and friends. The NFMCPA created materials for people with FM, Support Group Leaders, and other advocates to create awareness and education of FM and chronic pain illnesses.

Walk-to-CURE-FM-event-kit-with-shadow

National Fibromyalgia & Chronic Pain Association Community Picnic, Walk to CURE FM, & Mall/Farmer’s Market Table Top* Event Kits contain:

• 11×17 Table top cardstock poster with tripod
• 11×17 Posters for community event boards
• FM Information Brochures
• Guide to Creating Local FM Awareness Events
• Event check-off list start to finish
• Buy Door Prize Tickets sign
• Door prize drawing tickets ($1/ each or 6 for $5)
• Donation sign
• Receipt book for donations
• Support Fibromyalgia Research Petition

An NFMCPA External Events Agreement is available here.  To order your free Awareness Day Event kit, please send an email to info@fmcpaware.org.

An NFMCPA External Events Fundraising form can be found here.

(Fundraising is not required to receive the free Awareness Day Event Kit.  Donations and fundraising are always appreciated – but we don’t want that aspect to hold you back from creating your great event in your community.)

*Table top kits do not contain tickets or ticket signs.

Fibromyalgia Awareness Day Community Picnic Event 

A specific Community Picnic check off list created by the NFMCPA offers instructions to volunteers about how to host a FM Awareness Day Community Picnic.  The information includes suggestions on how to garner local sponsorships such as donations of food items; paper products (plates, napkins, etc.); prizes for old-fashioned picnic appropriate games, i.e., three-legged races, balloon toss, etc.; media awareness development such as local newspaper, radio and television coverage; FM informational brochures and reusable table top posters promoting the “CARE & Make Fibromyalgia Visible” theme.  A Petition for Fibromyalgia Research to find a cure and treatments is part of a larger ongoing effort to send a united message to national legislators and policymakers.

Fibromyalgia Awareness Day – Shopping Malls, Health Fairs, Farmers Market, Table-Top Exhibits

Putting a special emphasis on reaching out beyond the FM community to educate the general public about FM, the NFMCPA is suggesting that people consider hosting an FM Awareness table at a public location frequented by crowds of people.  Most cities have shopping malls that allow community-sponsored nonprofit awareness events. The NFMCPA offers the Fibromyalgia Awareness – Shopping Malls, Health Fairs, Farmers Market and Other Public Venue Event Kit.  If your local area does not have a shopping mall or the management doesn’t allow information tables, then think about scouting out local health fairs, farmers markets, libraries, grocery stores, exercise gyms, etc, to inquire about setting up a Fibromyalgia Awareness Information table.  The Event Kit gives you everything you need to create this type of outreach, including a special check off list for this activity.  Visit here for more information.

Fibromyalgia Awareness Day Walk to CURE FM

The NFMCPA has once again posted information regarding how to hold a local Walk to CURE FM Walk.  NFMCPA’s excellent Guide to Creating Local Fibromyalgia Awareness Events is now available at www.fmcpaware.org website for easy access. Walks are just one of the components listed in this guide which details several options for people who want to host a May 12 Fibromyalgia Day Awareness Event.  If you’d like to create a public FM awareness Walk to CURE FM, new materials offer ideas to involve others in promoting the walk to the general public.  The Walk to CURE FM Check-Off List includes ideas on reaching people outside of the FM Community to participate in this type of advocacy event.  The Guide to Creating Local Fibromyalgia Awareness Events is currently readable on the NFMCPA website, but hard copies of the publication are available for use by NFMCPA constituents and advocates.  A free Walk to CURE FM Event Kit is available on the website and includes a copy of the Guide.

State Legislature Visits – Proclamation and Resolution Program (USA only)

The NFMCPA Legislative Proclamation and Resolution Program is available on the website at http://www.fmcpaware.org/proclamation-and-resolution-program-a (under Community, then Awareness Day).  The information can easily be downloaded and made usable by NFMCPA constituents.  As in past years, people with fibromyalgia and their loved ones will be encouraged to approach legislators to recognize May 12 Fibromyalgia Awareness Day.  Advocates are encouraged to collect support signatures from the public that can be sent to elected officials to illustrate backing from voters.  The NFMCPA plans to build on this public awareness format through 2013 and beyond in an effort to spread CARE to Make Fibromyalgia Visible Campaign.  Click here for more information.

A-Day-Aware-for-homepage-2013

The observance of International Fibromyalgia Awareness Day, officially May 12, can take many forms.  The 2013 theme – “CARE & Make Fibromyalgia Visible” – encourages people to contribute, advocate, participate in research, and educate others about fibromyalgia.  This day brings people with FM and their communities together around the world.

C.A.R.E & Make Fibromyalgia Awareness

make-FM-visible-and-care-FINAL-2013

The National Fibromyalgia & Chronic Pain Association encourages organizations worldwide to make fibromyalgia visible by increasing awareness and understanding during May and on May 12 Fibromyalgia Awareness Day.

To download free logo to use in signatures, on webpages, or wherever you like, Click here.

nfmcpa-walk-to-cure-fm-graphic-2011-mar-25-small

The Walk to CURE FM national walks are spreading.  Join or start a walk in your community!  Click HERE. Questions about the Walk to CURE FM?  Experience with creating a walk?  Please share your thoughts on the community tech support forum.  Thanks!

PLEDGE TO CARE

pledge-to-care-logo-final

Family members, friends, and healthcare providers can show their support for those with FM by taking the NFMCPA’s Pledge to Care.  Those who take the pledge with have their first initial, last name, state and country listed on our “We Care” page, along with name(s) of individual(s) they are honoring.  Click Here!

Give through LIGHTS OF HEALTH

lights-of-hope-thumbnail

Wherever you are let your light shine at the National Fibromyalgia Awareness Day Event.  Whether you will be there in spirit or in person, you can sponsor a candle in honor of yourself or a loved one living with FM.  Click Here!

AWARENESS EVENTS AROUND THE WORLD

globe-with-butterflies

Fibromyalgia events are held in many places.

 To join an event near you, please locate the “Awareness Day Events” button below the map.
(US – to post your event, please Click HERE!)
(International – to post your event, please Click HERE!)

A Mish-Mash Update Post

You might remember back in January, I wrote Bigger is NOT Better. As part of a recent campaign in Australia, I pledged to lose 30 kilograms (about 66 pounds).

I am reminding Sherri Caudill Lewis, Lara from Live your dream life and sparkle, Kimberley Hatfield- Patty, Valerie Dunlop, Vicki, FibroLogic (all people who commented on the original posting), and all those who didn’t comment but decided they wanted to lose weight, that we are still in this together. How are you all going?

Anybody else trying to lose some weight to feel better?

I have lost 9 kilograms so far and I’m working really hard to try to exercise more and eat less (chocolate, cheese & ice-cream). The new season of BLThe Biggest Loser just started and I decided that it was the perfect time to do sit-ups and crunches each day. I figured that if I was going to lose all this weight, I didn’t want a ‘flappy’ tummy. I knew it was going to hurt; but I hurt everyday so, I thought, let’s make it worth it.

My Pain Specialist vetoed that idea! The more stomach muscle spasms I was having, the less I could do any aerobic exercise (ie: walking).

So, I have just returned from my warm water exercise class (a permitted activity), where I worked as hard as possible (and, I can tell already, was too much). Right now, my body feels all stretched out and fabulous BUT tomorrow I know that my muscles will be screaming!

brilliance-1stIn my shower, afterwards, I test drove a hair colour called Ultra Violet. I thought I may be able to get a great purple (I’m going Purple for the entire month of May!) in one process. I stopped at my hairdresser’s first to check that, if it didn’t give the desired result, we could bleach it out and try another purple. It’s still damp but it’s looking more red than purple – BUMMER!

***AM.02-11.LubesTip of the Day***The exciting news is that I found a new use for lube. I couldn’t find any Vaseline to put around the edges of my hair (to stop my skin going purple) so I tried lube (especially seeing as I’m not having any sex) and it works really well – ***Tip of the Day***

So, that’s all my latest news…have you got any plans for International Fibromyalgia Awareness Day?

Say CHEESE…Click!

GET READY! Start your creative juices flowing!

November 12th will be 6 months to International Fibromyalgia Awareness Day 2013. To continue our AWARENESS momentum, I am running a Feeling Fibro Fotos competition.

Entry: Nov 12,2012 – Nov 22,2012
Voting: Nov 23,2012 – Dec 12,2012

More details to follow…