"I found it hard in my early years with Epilepsy... I felt like I was alone and no-one else could understand what I was going through. But then I decided to just ask people in the world around me, and I found this was not the case. It's a world full of people who have travelled the same journey, and do nothing but empathise and offer support simply because I am on the same path." - Paul Lang: CEO & Founder
ECA was founded in 2016 by CEO Paul Lang who himself has suffered Epilepsy for over 20 years. The foundation was initially established as "Epilepsy Connections Australia"... our CEO set up the original ECA with an idea to let people with experience in Epilepsy help others suffering the condition. A very simple "peer support" principle.
But the amount of support that came from the Epilepsy community was AMAZING!!! The Epilepsy community is different to many others in the world. The word "no" seems not to exist. If you ask for help with Epilepsy everyone in the world with the condition will just jump to your aid. BUT it doesn't get any publicity so you actually have to ASK. That's the problem... So after a short stint as "Epilepsy Connections Australia" - CEO Paul Lang expanded ECA into the current "Epilepsy Connections Affiliated"... the international version of the foundation.
The current ECA is framed around 2 key principles that both serve 2 individual purposes...
1) PUBLIC ACCESS TO MULTIPLE AND VARIED EPILEPSY RELATED SERVICES WORLDWIDE:
*Epilepsy is an enormous field and people need help and support covering a vast range of topics. It's not just "seizures". Those suffering from the condition (and those in their support networks such as partners, parents, family and loved ones) need help on so many different levels.
On top of the actual symptoms of Epilepsy... people can also suffer from major medication side effects, psychological issues such as depression, isolation, anxiety, anger / rage symptoms (and more), financial and career barriers, family / relationship issues, stigmatisation, abuse... AND MANY OTHER ISSUES.
This is why we strongly believe it is essential to have a central location that people from ANYWHERE IN THE WORLD can come and seek assistance for ANY ISSUE RELATING TO EPILEPSY and be directed to the most suitable and relevant organisation to suit their needs by caring professionals who understand the issues they are going through.
2) FREE SERVICES TO CHARITIES & ORGANISATIONS ALREADY SUPPORTING EPILEPSY:
*The other core reason we exist is to support work ALREADY being done by organisations that exist all over the world. Charities, Medical entities, Awareness groups - there is already so much amazing work being done to support Epilepsy, create awareness, and research the condition scientifically. So we offer 100% FREE online services to these groups to help promote their work and expand their organisations. ECA has worked with all kinds of groups (Medical, Charity, Corporate, Government etc...) from all over the world on promotional campaigns related to Epilepsy. We have also provided free services to dozens of charities such as free websites, online expansion programs and global public promotions to help them expand their amazing work.
The reason our foundation is named "Epilepsy Connections" is due to our belief that creating connections to other organisations and promoting the amazing work already being done is the key to progressing Epilepsy as a cause. By promoting their work, offering them free services, and giving the public easier access to their work - we believe we can increase awareness of the amazing things already being done across all fields of Epilepsy: Charity, Medical, Social and otherwise. ECA itself is not designed to be the "destination"... we are just the "avenue" for others to get there.
And that is how ECA became what it is today. We took this (fairly basic) idea, applied it to today's global online audiences, then designed a foundation that provides free services to both the public and organisations. Our framework is structured around 3 departments who each cover the individual aspects of our work:
Public = Free database, free services, free enquiries, multiple platforms
Organisation = Free public access, free promotions, free online expansions and website design
Awareness = Advocacy campaigns, CEO presentations, ECA joint international work, International medical conference work
We cover all aspects relating to Epilepsy in some way. We either promote it, support it, take part in it, offer services for it, or can direct you to organisations that can. We may not always be the final destination - but we will always be the best avenue to help you find it.
Epilepsy Connections Affiliated was started in 2017 (originally “Epilepsy Connections Australia” prior to international expansions) by our Founder Paul Lang who himself was diagnosed with Epilepsy when he was 19. Unlike many common younger diagnosed children, Paul was driving on his way home from work before having his first Tonic Clonic Seizure at 80kph wrapped in steel before heading across the highway head-on into a plumbing van for his initial diagnosis.
Having to adjust to a disability at age 19 after a full childhood of perfect health was no easy task, but the actual part Paul found so isolating was that Epilepsy is a very dis-jointed disease in terms of support. Programs are all separate, networks aren't "networked" and it is almost impossible to find someone with any kind of similar experiences to chat with. There is also the “white Elephant factor” in that Epilepsy is one of the most common disabilities in the world - but information, awareness and community understanding is that of a rare condition in most cases.
This too was the case for Paul's family and friends who also went through a very tough time watching him go through it, in most cases not being able to do much but be there for him. So after nearly 20 years in and out of emergency, losing jobs due to OH&S and worrying about the years going by - Paul decided that things needed to change for Epileptics and the people who cared about them - so he started ECA.
The simple fact behind ECA, Paul Lang the CEO and all the mandates that drive us PLUS those which created the ECA foundation? Is that I wanted to create something that missing I NEEDED as a patient of Epilepsy.
I am very proud to able to able to say "We are ECA: the largest worldwide network of Epilepsy organisations on the planet that offers FREE access for public support - and FREE services to charities."
If anyone would like to dispute this "Title" ECA & myself as CEO are always welcome to such a debate lol...
- Paul Lang: ECA CEO & Founder
ECA's mandates are made very clear both on a national, intentional AND online level. We outline them on all our platforms but this is where people can find a clear point reference to both our Foundation & it's Mandates:
"Epilepsy Connections Affiliated (ECA)" is a 100% non-profit charity foundation. We do not accept funds or donations of any kind.
ECA runs a wider network of global Epilepsy organisations including charities, online groups, medical foundations (& others) into a centralised database for easy online public access into awareness & Epilepsy
ECA 's other main purpose is to provide worldwide Epilepsy charities with free services to help expand their online networks... "ECA Connections" are provided with free services via ECA to help expand their charities globally.
These mandates are very clear & simple in principle. ECA only uses FREE systems (or systems we can pass on for no cost at least...) hence our network can be passed on to the entire world at NO COST - plus all the services we offer our "ECA Connections" are also free for the same reason. We do not ask for / accept funds as we utilise free online networks to promote other Epilepsy charities plus help the public access information & support.
1) A FREE GLOBAL NETWORK:
If you have Epilepsy and need support? It doesn't matter where you are in the world or how specific your needs are... ECA can find someone to suit your needs. The purpose of our vast Global Epilepsy Foundation database is so we can direct enquiries from ANYWHERE in the world (now matter HOW SPECIFIC the question might be?)... to a great support network in your region.
No messing about worrying "can they help me in my area?" or "will these people charge money?" or "can they help with my EXACT Epilepsy issue?" If you contact ECA then YOU WILL GET SUPPORT FOR FREE IN YOUR REGION FOR YOUR NEEDS.
2) SUPPORTING THE SUPPORTERS:
We also understand it is not just "the people with Epilepsy" that need support. Those who have loved ones like Partners, Parents, Family, friends & so forth that watch us go through Epilepsy also share a huge burden. That is why ECA strongly believes THOSE WHO SUPPORT LOVED ONES WITH EPILEPSY DESERVE SUPPORT.
Hence one of our core mandates is we ALSO promote the fact we "Support the Supporters" so if you have a loved with one Epilepsy & feel you need help or have questions you would like to ask? ECA is the place that welcomes you.
3) FREE SERVICES TO CHARITIES:
One of our main focuses is "expanding Epilepsy charities" via our FREE services. We offer 100% free services to charity such as online platform design, websites, fundraising systems, IT design / promotions / imaging and video, International collaboration opportunities plus much more...
AND the reason we offer these services for free to charity is at the heart of our core mandate towards charity: EXPANDING CHARITIES & AWARENESS VIA OUR FREE SERVICES WILL ACCOMPLISH FAR MORE THAN ECA CAN DO ON ITS OWN. So that it how our operations run as a major organisation.