Maddy Mads Birthday Fundraiser

This year my birthday fundraiser is to help cover the printing costs for our new erythromelalgia brochure and medical alert card . This brochure is a labour of love and full of my management tips, how to get diagnosed, the patient work up, tests of exclusion ,identifying the causal factor and type of EM, comorbidities to watch out for, drugs and drug protocols , key facts , photos , living with EM ,the latest EM information and more .

I also would like to try to cover the shortfall in the production and distribution funds for The Erythromelalgia Warriors Global Awareness Program 2022 .

We are incredibly proud of our global awareness program that distributes free educational materials and eye-catching information worldwide. The program means that medical and health care professionals, social care workers, medical /health care students and educators are slowly becoming more aware of this excruciating rare syndrome and have a greater understanding of the enimgma erythromelalgia and are slowly becoming more aware of this our excruciating rare syndrome. Materials include eye-catching highly informative leaflets, posters , fact sheets and other information.

Every year we hold an end-of-the-calendar-year donation campaign, because we rely in great part on the generosity of our readers to help fund our mission. We did well, breaking our previous record and meeting our challenge grants. However, if you can afford it and feel inclined, it’s not too late to start 2022 with a donation.

This Clinic in the UK joined our EM awareness program 4 years ago. They fundraise for us and help us to raise awareness of erythromelalgia..

With more and more children and young adults developing erythromelalgia and PEPD , we were greatly concerned that many youngsters with EM had less educational opportunities when compared to their peers. Adding schools and universities to the awareness program and targeting teachers and students in our educational project has helped immensely .Supporting caregivers and parents advocate for their child has been very productive.

As erythromelalgia warriors do not charge a membership, I often get asked how we manage to do what we do and provide all our services free of charge. Well, here is our big secret :) We rely on your donations and fundraising efforts to help sponsor these brilliant educational projects and awareness programs ( and my big smile ;)) .

If I let you know that every leaflet costs us around $5 or £4 with postage , it will give you a better idea of the funds we have to raise.

Without funds we will not be able to continue this vital much needed program

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Despite having an extreme form of erythromelalgia and being an advocate for many years , I still find it incredibly difficult to describe this miserable syndrome. I tend to describe erythromelalgia as 'Burning Man Syndrome' and tell others to imagine looking and feeling like they are covered in 2nd degree burns after being doused in oil and set on fire . Then I tell them to imagine adding trophic skin changes, nerve damage , long term systemic effects, chronic fatigue and the unrelenting daily neuropathy to the overwhelming intensity, severity and life- changing chronicity of the pain experienced every single day!

Above is just a small selection of the type of EM-related materials ( leaflets, posters, fact sheets, infographic cards etc.) Erythromelalgia Warriors produce, print and distribute FOR FREE worldwide ( medical professionals, pharmacies, clinics , schools, colleges and universities etc.) to educate and raise awareness of erythromelalgia syndrome

Images of Burning Man Syndrome

Living with erythromelalgia is life-changing.

The lack of education and awareness of erythromelalgia is a huge problem!

Together through donating and fundraising you and I can continue to make a difference!

Without greater awareness - nothing will change!

WHO ARE THE EM WARRIORS?

The Erythromelalgia (EM) Warriors are a dynamic non-profit international organisation dedicated to educating, encouraging and empowering all those living with or affected by erythromelalgia and its comorbidity.

A volunteer-led support and information network, we provide invaluable free 24-hour online and outreach services world wide.

OUR MISSION:

To empower lives touched by erythromelalgia by facilitating the tools for self-advocacy.

To advance up-to-date knowledge , raise awareness and educate through a strong social media presence, innovative online campaigns and range of erythromelalgia and erythromelalgia-related resources.

To develop , print and distribute free information as part of our offline global erythromelalgia awareness program and educational project.

To sponsor research and support independent projects through fundraising.

To empower lives touched by erythromelalgia by facilitating the tools for self-advocacy

To raise awareness and to promote greater understanding of EM by producing, printing and distributing educational resources

To advance knowledge through developing innovative social media campaigns and sponsoring independent research.

OUR VISION:

A world where there is greater understanding of EM and where the hope of a cure becomes reality.

Most members say that they are extremely grateful for all the amazing support and information they receive but not everyone asks what they can do to help our mission. Well, my birthday fundraiser throughout January is a fantastic way for you to give back and help me raise the money we need to cover the shortfall in funds for the new brochures and our 2022 awareness program. I managed to raise $1500 offline but we need to match that to cover costs.

Without awareness nothing will change.

Thank you !

BTW: Don't ask me how old I am. I will only reveal my age if we reach our target ;)

Mads ♥ ♥ ♥ ♥