Advocacy & Raising awareness
FIBROFLUTTERS | VOLUNTEERS | Health / Patient / Research / Pharma Advocates #notjustpatients
We are slowly becoming ‘flexibly-centric’ and by that I mean we have a fantastic variation of stakeholders amongst our ‘Global’ chronic illness network, which gives us the opportunity to utilise my spherical centric model that allows for flexibility.
In my opinion, last year in Barcelona at the eyeforpharma conference I did point out that centric means ‘centred in a circle’ to me, not a round disc like most patientcentric models appear to look like. Recently, I have been asked a few times about my viewpoint on achieving patientcentricity and within my answer each time I said. “Why are all the patientcentric models 2-dimensional when centric to me reflects more of an image of a spherical shape?” I can see a shift happening regarding inckuding ‘all-stakeholders’ in some pharma companies and other organisations from within the healthcare industries, so changes, and positive looking developments are happening.
Being able to multi-task is something that even with brain-fog, and chronic pain, disabilities, fatigue, or filled with anxieties we all still need to do, so making it as easier as possible is always my favourite strategic move. Apart from that it gives us scope to work on projects simultaneously as Founders on our own individual work too.
FibroFlutters has a fabulous social media communications avenue / chronic illness portal for everyone, all stakeholders & is perfect for raising awareness & sharing information. #notjustpatients
Having followers from across the globe gives us a global insight into how chronic life is the same all over the World. Knowing that we help to connect people & possibly even help them is amazing.
Here’s a look into our world
The aim is to also support the fundraising efforts of charities if we can and to help educate where needed and provide literary material to those who’d like it. Alongside that of course is our wish to encourage present and future research into Fibro, Me/CFS, EDS/HMS, & other illnesses, including #rare, in the hope that one day a group of scientists will say ‘I’ve cracked it all we need to do is…..’
We do this in a variety of ways. Through sharing e-postcards/posters across our social media network; handing out our illness literature with other patients, doctors, consultants and whoever shows an interest; helping our sister group when they run their fibromyalgia awareness drives; supporting local charities and organisations when possible and by pointing people in the right directions for where to find information.
Shopper bags printed with quotes written by FibroFlutters members and raffled to raise money for Fibromyalgia Action UK for Fibromyalgia Awareness Day 2016
Each bag when sent out to winners contained a selection of goodies, literature and FibroFlutters printed postcards.
EVENTS With Sunderland Fibromyalgia Support Group
The top photos show us with our Special edition t-shirts (see poster above) on whilst helping out, all profits from our t-shirts were added to the shopper bag raffle and fundraiser to raise £250 towards educational literature for FMAUK 2017
Our sister Fibromyalgia Support Group in Sunderland hold many events and they do a lot of fundraising for ‘FMAUK’, as well as for themselves. They are a lovely bunch of people who hold a regular meeting for Fibromyalgia and chronic pain patients and their support system is very good. They regularly have guest speakers and enjoy other activities such as crafting for fundraising. A great way to make new friends and find people who relate to you and your chronic illness.
FibroFlutters also offer extra support for Fibromyalgia and chronic pain disorders but we also offer the opportunity for you to have an informal meet ups to discuss all things related to your chronic illnesses including Fibromyalgia, EDS, JHS, ME, CFS, Depression, Anxiety for a few popular examples.
This way we can work in tandem with our sister group as a social media support system for information and advice about fibromyalgia but also other illnesses that they may have. We do meet but our work is predominantly online with our social media network so between us we provide quite a good support system for people with Fibromyalgia and many other chronic, and even rare illnesses.
FibroFlutters campaign using social media channels, whereas our sister group holds raffles and events that we can help out at, and then both groups raise awareness by handing out posters and fliers where needed as well, such as doctors surgeries, hospital waiting rooms and even libraries.
Our sister group hold their meetings at The Mill View Social Club, Fulwell every first Monday of the month unless it’s a Bank Holiday when the meeting date will be announced.
For more information please contact Sarah via: firstname.lastname@example.org
FibroFlutters hold their meet ups every third Wednesday of the month informally at The Cooper Rose Bar, near the Park Lane Interchange, Park Lane Metro and there’s also a couple of Blue Badge Parking spaces and a couple of car parks nearby.
For more information please contact Carole Sian via: email@example.com
What Is Fibromyalgia?
‘Fibromyalgia is a chronic condition of widespread pain and profound fatigue. The pain tends to be felt as diffuse aching or burning, often described as head to toe. It may be worse at some times than at others. It may also change location, usually becoming more severe in parts of the body that are used most.’
This article has been extracted from the free Information booklet that FMA UK provides. To have this information presented in a professional A5 booklet, as well as the other articles please request one from the office.
This link takes you to the FMA UK website www.fmauk.org