In 2020, we are setting erythromelalgia sufferers and their families and friends a 3-month challenge to help us raise the necessary funds to continue raising greater awareness and understanding of erythromelalgia through our global awareness project.
This is a fun incentivised fundraiser and anyone can take part. So, starting January, we are asking you to give up something small, such as coffee or a takeaway, and donate the money saved to The EM Warriors Awareness Project instead.
As a form of New Year's and New Era's resolution, you may even want to give up something such as losing weight and make a donation for every kilo or pound you lose. This could be the year that you finally kick smoking or stop being a couch potato and get into a doable exercise routine. You can choose whatever you want in terms of what you give up (or decide to take up) as long as you pledge to donate a certain amount of money to us. To help strengthen your willpower , we have incentivised the fundraiser by added some great rewards :)
HOW TO TAKE PART
1. First you need to register for the fundraiser by donating $5 and telling us what you intend to pledge . Just donate and tell us in the comment box what you are going to give up for 3 months,how much you will save and how much money you promise to donate. When you register with your $5 , click the NO REWARD option.
2. The fundraiser will run for 3 months from January 1st - April 12th and you can register at anytime.
3. You can choose how much you donate and when you donate. So, you might choose to donate weekly, monthly or at the end of the 3 months . Donations should be made via this GoGetFunding page
4.Our GoGetFunding page accepts donations via Paypal and Cards. It has been set to USD but you can change the currency if you so wish by clicking the little arrow near the USD text.
5. Whenever you donate, please ensure that you leave your full name and what you have pledged so that our fundraising manager can keep a record of your donation progress . You might want to donate weekly and save up your donated amounts until you bag yourself a t-shirt or hoody.
6. Getting your friends and family involved too is an excellent way to motivate one another. Bringing loved ones on board will help you raise more money and it will even start spreading awareness of erythromelalgia too. Make sure you tell family and friends to put your name in comments when they donate if you are going to be the recipient of the incentive (i.e. Mother donates $25 and puts it is for Susan Smith). If your loved ones are after the awesome bracelets, t-shirts or hoodies for themselves, they would just put their own name.
7.To encourage you, we have some really super incentives up for grabs (see what you could win below).
8. All incentives will be rewarded at the end of the fundraiser ( i.e.mid April 2020) and the reward will be based on the total amount of money the donor has paid in at the end of the 3 months fundraising period.
SAVING UP YOUR DONATIONS: If you intend to make smaller weekly or monthly donations and save up over the course of the 3 months to earn your incentive of a bracelet, t-shirt or hoody you must choose the ' NO REWARD' option when you donate. Always make sure to state your full name in comments so that our fundraising manager can keep a record of your donation progress.
ONE DONATION: If you intend to make one donation to claim your reward. Donate and click the appropriate reward (i.e. You donate $100 to claim the t-shirt reward)
STRAIGHT FORWARD DONATION: Of course, you may just wish to make a straight forward donation without a pledge to give up anything. All donations are also eligible for the incentivised rewards. Just donate the amount necessary to claim your reward via this GoGetFunding page
9. DONATIONS: Donations can also be made via our Paypal site www.paypal.me/EMWarriors. Please ensure you put the reference: fundraiser
INCENTIVES: WHAT YOU COULD WIN
- Donate $200 or £200 and you receive a gorgeous soft EM-friendly hoody in a colour of your choice. Most colours available: Black, Grey, Blue, Green, Red, Pink, Purple,White, Orange etc. All sizes.
- Donate $100 or £100 and you will receive an awesome EM Warriors t-shirt in a design of your choice .See a few design examples at the end of the page. All sizes.
- Donate $30 or £30 and you will receive a super cool EM Warriors 'Burning for a Cure' awareness bracelet ( Adult/child sizes)
- Everyone who takes part in the fundraiser will receive a commemorative certificate pdf to print
THE EM WARRIORS AWARENESS PROJECT
If you are not a member of the EM Warriors then you might not be aware of who we are or that we provide free eye-catching, highly informative leaflets about erythromelalgia to anyone anywhere in the world to distribute in order to help us continue our dedicated mission to raise greater awareness of erythromelalgia. We also provide leaflets on two common EM - associated conditions Raynauds and Paroxsymal Extreme Pain Disorder (PEPD), which are also free of charge.
As our organisation does not charge a membership fee nor hit members up for donations throughout the year ;our big yearly fundraiser is vitally important as it is the only way we raise the monies we need to continuing doing what we do.
All monies raised in this fundraiser will go towards production and distribution costs for 2020.Last year alone our members distributed over 20,000 leaflets in 15 different countries - amazing right? But, we can not continue to run our free awareness project without your support so please rally your family and friends and get involved and please , please donate! .
The awareness project - something extremely important to each and every erythromelalgia sufferer and their loved ones - will be safely funded for 2020.
An example of free awareness materials. They detail important up-to-date information on the back.
WHAT IS ERYTHROMELALGIA ?
How to best describe the syndrome is hard as words cannot depict how wickedly painful, incapacitating and life- changing erythromelalgia - also known as ‘Man on Fire’, 'Burning Man Syndrome' and 'Suicide Disease' - actually is. Just close your eyes for a few seconds and imagine how it would feel to be set on fire everyday, and nurse 2nd degree burns for the rest of your life. Imagine how it would feel being stung by a thousand angry bees and having tiny shards of glass pricking and stabbing through your veins. Now, multiply that thought by a 100 and you still won't come anywhere close to imagining the excruciating pain experienced by someone who has erythromelalgia .
An estimated 3 in 100,000 develop this rare neurovascular chronic pain syndrome that can affect any part of the body, even inside the mouth, throat, eyes and genitals; it can affect internal organs too.
EM causes an intolerable localised or widespread burning pain, redness (erythema) of the skin, swelling, allodynia (skin sensitivity so it cannot be touched), pricking, itching and increased skin temperature. Some EM sufferers burn continuously while others have intermittent episodes of flaring that can last from hours to days to weeks at a time. Flares are commonly brought on by heat, humidity,stress, fatigue, pressure, activity and exertion but many other triggers: including limb dependency, barometric changes, showering, footwear, socks, wearing tight clothes or man-made fabrics , alcohol, coffee, spices, nightshade foods,other conditions and the extreme cold are involved. Many triggers remain unknown .
The intensity of pain experienced is so severe that it is often disabling; leaving many sufferers housebound, in wheelchairs and/or completely bedridden. EM does not discriminate either; it affects babies, children, adults, all gender and ethnicities.
The first stage for any EM sufferer is figuring out their own diagnosis. Erythromelalgia is such a rare, poorly understood syndrome that few doctors have heard of it or recognise its symptoms. No specific medical specialism manages its care and patients are sent from pillar to post for years whilst they search for answers.
The second stage is realising that there is no single effective treatment for EM. Sufferers must try one drug after another - often off-label drugs which treat other conditions - in a lengthy trial and error process where they pray that the next infusion, tablet or cream they try will help bring them a few hours of comfort.
The third stage is the struggle they have trying to live with life-changing excruciating burning knowing that there is no known cure!
Fulfilling our mission to raise greater awareness of erythromelalgia is imperative!
It is only through awareness that we can bring about change.
It is only through your donations and your support that we can raise the necessary funds to do so.
Examples of erythromelalgia flares
WHO ARE THE EM WARRIORS?
The Erythromelalgia (EM) Warriors is a dynamic non-profit international organisation dedicated to educating, encouraging and empowering all those living with or affected by erythromelalgia and its comorbidities.
We are a volunteer-led support and information network that provides invaluable free 24-hour online and offline outreach services world wide.
Our Mission: to empower lives touched by erythromelalgia by facilitating the tools for self-advocacy ; to raise awareness and to promote understanding of EM by developing innovative social media campaigns, educational resources, and sponsoring independent research and offline awareness projects.
Our Vision: a world where there is greater understanding of EM and where the hope of a cure becomes reality.
We could not do what we do without the fantastic support of our members, followers and supporters
We are always in need of donations so if you have a little to spare, however small, we would be most grateful at any time of the year. Donations are always welcome www.paypal.me/EMWarriors
NOT YET A MEMBER OF THE EM WARRIORS ?
It is free to become a member - we would love to meet you!
Examples of erythromelalgia flares
Check out just some of the awareness products which we will be giving as incentivised rewards.
Available in all sizes, most colours and many more designs.
So,what are you waiting for?
Make that pledge and get involved in this fun incentivised fundraiser!