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.

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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.

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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

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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.

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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

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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

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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

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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!)

Boost Your Buffers

***WARNING – really long post***

Some of us are lucky enough to have a Support Group to go to for monthly/weekly meetings. And some of us aren’t.

If you are looking for a support group in your area, the National Fibromyalgia and Chronic Pain Association has a list of world-wide groups (it is by no means complete; so if you have a group, please add it to their list). But what happens when there is no group near you?

Why not start your own support group?

Anyone can start a Support Group – It does not require special skills or training and there are no legal, insurance or financial obligations involved in bringing people together to support each other.

Why start a Support Group?

  • To overcome personal hardship and to improve your quality of life
  • To meet needs not being met within the community
  • To meet with other people in a similar situation
  • To bring about change through advocacy or campaigning
  • To empower yourself and others
  • To help yourself and others by learning new ways of dealing with the issue
  • To create the opportunity to take control of your life
  • To gain inspiration and support by sharing personal experiences and coping strategies
  • To create awareness and understanding of the issue

BUT, starting a group can place demands on your time, family, social life and possibly your finances. You might have to cope emotionally with other people’s issues as well as your own. Before you start a group, think ahead and be clear about how much time, energy and resources you have available.

It is important to focus your ideas on what kind of group you hope to develop. Find out if there is already an established Support Group surrounding the issue. If so, talk to the contact person or attend a meeting. Groups involved with the same issue may have different aims and objectives. One group may lobby for change, while another exists to provide information and mutual support.

If you are interested in starting such a support group in your area, here are some tips for getting started:

1. Once you have decided to start a Support Group, take your time, as there is no need to get things done quickly. Six weeks is adequate time to get a good response and to be prepared.

2. Define the Key Issue that the group members will meet to discuss and share

3. Create a Statement of Purpose and the Aims and Objectives

4. Consider the Costs Involved Phone calls

  • Refreshments
  • Postage
  • Venue hire
  • Flyers

Seek Assistance where possible

  • Approach your local Member of Parliament (MP) to ask for assistance with photocopying and administration.
  • Ask for a small donation at meetings.
  • Contact your local council, as many fund causes that benefit local residents.
  • Approach your local church, council office, or library and ask for the donation of a room.

5. Pick a name for your group – Try to make the name interesting, inviting and relevant to the issue.

6, Set and Confirm a Meeting Date and Time – Think of the availability of your target group when planning your meeting.

7. Start talking about it! This is the most important step. Talk to your doctor, physio, rheumatologist, etc. They may know something, or may talk to a supervisor who can help.

8. Book the Venue.

9. Establish a Contact Person – A contact person is the first line of communication between the public and the group. A separate telephone number strictly for use by the support group is great, but not always practical or possible because of the group’s budget restrictions. Sometimes organizations providing meeting rooms have voice mail systems available for the groups they host. This kind of set up can be really handy because group members can take turns in retrieving and answering messages. Should you decide to use your own home or office phone number (your boss might be real impressed?) for the group, make sure all family members know about it.

10. Decide on some Group Activities – Will you hold organised social outings, have guest speakers, exchange personal experiences, campaign for change or discuss the latest research?

11. Make flyers. Yes, this may take some footwork, but you can email or fax directly from your computer. Places to advertise your group include:

  • Supermarkets
  • Variety stores
  • Music stores (musicians are prime candidates)
  • Health food stores
  • Laundromats
  • Drug stores or pharmacies – Keep in mind, many pharmacies do not allow posters of any kind. If they don’t have a pin-up board ask the head pharmacist and give them a copy of your flyer “for their own records” while you’re at it.
  • Public libraries
  • Post office boxes
  • Lunch/staff rooms
  • Hospitals
  • Colleges, universities, schools
  • Churches
  • Doctors’ offices – if you can personally give one to the doctor, perfect. You probably only get to talk to the receptionist so give them two: one for the doctor and one “for keeping on file.” And heck, since you happen to spot a bulletin board, “mind if I stick one on there…”
  • Town/city event calendars – often a place where your group can get a mention.
  • Senior Citizen buildings – check with the building manager for in-house newsletters.
  • Local TV/radio stations – community announcements, talk show hosts, newsroom.

Ask group members to take a few flyers to put up around their neighbourhood to spread the word. They can give one to their family doctor, dentist etc. next time they need to see them.

12. Get it in the local newspaper.

13. Don’t expect a huge turnout immediately. Don’t be discouraged if you start small. Small is good.

14. Create an e-mail list and a phone calling list. Find someone in the group who will help with each.

15. Get others involved as fast as possible in brainstorming on meeting topics, speakers, etc. The more people who buy into the group as being a WE group, the more participation there will be. And remember, you can’t do it all. It must be a WE group to survive.

16. Save all the handouts that you get for each group to give to the new people.

 

 

 

 

 

 

Wow! All this sure sounds like it’s going to take up a lot of my time! It could, period. But all in all, a couple of hours a month for the meeting itself plus a couple of hours a month delivering flyers is not that big a deal. It will give you a sense of fulfilment and achievement. When the group gets bigger you can get others to help out doing chores.

Personal Sanity

You need to completely, totally be aware that the going can get rough, very rough. You’ll meet people who are at various stages in their journey. Some are only curious. Some are there at the suggestions of their physicians. Some are there to clutch on even the tiniest glimmer of hope they pray for that you might give them. Some of these folks are in dire straits and they’ll spring their horror stories on you about how totally screwed up their lives are. Listening to these gruesomely descriptive tales can really, really, really get to you. You need to line up someone who you can talk to if/when that happens beforehand because chances are that someday you will need to depend on them to help put things in perspective. Don’t assume for one second that you’ve heard it all, even if you been doing it for a while, because I assure you haven’t.

Frustrations

After having done all the leg work, the announcement is in the paper and you sit there eagerly awaiting the first few hundred people to come through the doors – and only two show up… You figured if one out of five people are supposed to have it (to whatever degree), you ought to be able to fill up the football stadium once a week… Yup, there could be more, should be more, but this too, is sometimes a reality. Simple: you tried your best, you’ve done your job. Since there’s only a few members it’ll give you more chance to really talk to them and reach a little deeper than in a sold-out house. You can also exploit the low turnout by focusing more on the few that are there. Can they help to promote the group? Do they have suggestions? It could be that low turnouts are common for your area. So before feeling bad about doing a crummy job – put it in perspective. And, even if you reach only one person, you’ve reached one more than had you not tried at all – pat yourself on the back for doing a great job!

Remember, if you start a support group – list it with the National Fibromyalgia and Chronic Pain Association. Also, please let me know – I would be really interested in hearing how it goes.