Epilepsy Connections Australia in Melbourne, Victoria, Australia | Charitable organisation

Epilepsy Connections Australia

Locality: Melbourne, Victoria, Australia

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• Medical and health
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25.01.2022 Test 4:3 - https://t.co/nWoJGX7ase

25.01.2022 OUR LIVE PURPLE DAY EVENT WILL BE BROADCAST ONLINE IN JUST UNDER 3 HOURS FOLKS! It be taking place LIVE via Skype with charity CEO's from all over the world taking part to discuss the global issues confronting Epilepsy and also the current crisis effecting everyone worldwide due to COVID19. We will attempt to broadcast via ECA's platforms live but will also be recording the event so people can watch later. My thanks to ALL of our CEO's who have worked with us despite current challenges to keep this happening.

25.01.2022 HERE IT IS FOLKS! "PURPLE DAY 2020 LIVE CHARITY CEO CONFERENCE"... Just occurred a few hours ago and the event was recorded LIVE so the worldwide audience could watch post-event. Dr. Nirmal Surya CEO of Epilepsy Foundation and Paul Lang CEO of Epilepsy Connections Affiliate (ECA) present our live group conference with Epilepsy charity CEO's from all over the world. Speakers discuss not only their own charities and the work each is doing around the world - but also how the cur...rent COVID19 crisis is effecting different parts of the globe and Epilepsy communities therein - and how collaboration between charities (just like we are promoting via our conference and campaign) will become an ESSENTIAL part of future charity efforts... at the least successful ones anyway. Speakers involved were Paul Lang ECA CEO (based in Australia), Dr. Nirmal Surya Epilepsy Foundation CEO based in Mumbai (and members of his team who were kind enough to take part) and our charity CEO speakers were: Dr. Prince Kazadi - ASLEK Epilepsy foundation (D.R. Congo) Fred Kiserem: Kiserem Epilepsy Awareness Foundation (Kenya) Stacii Floyd: Brainstorming Epilepsy Festival (USA) Gideon Ronie: Epilepsy Awareness Uganda Natalie Boehm: Defeating Epilepsy Foundation (USA) I would like to take an opportunity to firstly thank Dr. Nirmal Surya for contacting myself to collaborate on this project. Our initial plans were obviously somewhat different as this event began prior to the current COVID19 global crisis - so we were planning on a LIVE streamed event with a larger audience to present to BUT under current gathering restrictions worldwide this was no longer possible. So I'd like to thank EVERYONE who took part and worked with us to keep the event going (even in a different format) despite the constantly changing daily environment. I am very proud to have run this project with such dedicated people and the fact we were able to keep this going... when many global charity events have simply been cancelled... is a shining example of how collaboration and innovation CAN make ALL the difference. I look forward to the ongoing campaign we will be running based on this initial project - and individual "video projects" prepared by charities this week and edited via ECA will be being posted over the next 24-48 hours along with this footage. So much more to come folks! Paul Lang: ECA CEO & Founder

24.01.2022 "WELCOME TO INTERNATIONAL PURPLE DAY 2020" Dr. Nirmal Surya CEO & Paul Lang CEO Here is a post from Dr Nirmal Surya - CEO & Founder of Epilepsy Foundation - AND the Chairman of "SURYA NEURO CENTRE" (plus many other global charity efforts) relating to the UPCOMING "Purple Day 2020 LIVE event" being shown at his Lotus house clinic. There are other awareness opportunities being offered online via ECA and this campaign BUT we are looking for the DIRECT charities who can take part... in the LIVE online event. Dr Surya and his foundation (as is ECA) are offering 100% FREE promotional opportunities & the chance for "Grassroots charities" to tell THEIR STORIES to the world LIVE! Secondary video comment from ECA relating to "scheduling process" will be posted attached to this post in a few mins... Contact "[email protected]" and tag email as "Purple Day" for express enquiries...

24.01.2022 A great thank you to the "Earth to Bottle" group for posting such kind words about myself and ECAs Connections Fred, Chifundo and Gideon. It is a great help to have any public spread of our work especially now Chifundo has his new website and online network operational plus a GFM campaign on the run. My thanks to group managment for this lovely post and hope we can have even greater success stories to share with you as we assist these charities expand. Paul Lang: ECA CEO & Founder

24.01.2022 New social media ICONS updated such as memes / GIFS to online networks - please feel free to check out & share: https://giphy.com/gifs/eMnUKWMnVTS4783Gbk

21.01.2022 NOTIFICATION OF A DELAY AND RE-SCHEDULING OF "BRAIN & SPINE 2020" CONFERENCE... Just wanted to give a notification and update that my upcoming presentation at the "5th International Conference on Brain & Spine 2020 in Malaysia" scheduled for March 16-17 has been delayed due to issues relating to Corona Virus (I believe this is about international travel issues and difficulties due to current flight bans at many worldwide airports that delegates would need to use to connect to... Malaysia). The conference is currently being re-scheduled for Paris in June... once I have the exact data and promotional material I will post full updates with exact conference details. My presentation and topic will remain unchanged and still be being shown via video presentation at the "new" conference regardless of changes to event. Apologies if this is any kind of inconvenience to anyone (I don't see how it would be - my conference is work is hardly groundbreaking lol...) but this was unavoidable on ECA's part. Paul Lang: ECA CEO & Founder

20.01.2022 Here is an opening statement and description from Dr. Nirmal Surya of Epilepsy Foundation of our "Purple Day 2020 LIVE event" to be held online in just under 90 mins via Skype... We will have charity CEO's from all over the world chatting about Epilepsy in their regions plus the current events worldwide and how it is effecting their parts of the world and different Epilepsy communities. We will then post the recorded event via ECA's onilne platforms so everyone can watch from all over the world.

19.01.2022 Just some perspective...

19.01.2022 Fantastic to be working with Chifundo Epilepsy Awareness Malawi and it its founder / CEO on the new foundation website just launched via the ECA network hosting systems - www.chifundoepilepsy.org We unfortunately had many delays (as did the entire world) that meant we had to both re-design website for larger online audiences with more diverse contact methods - plus more services in-line with the COVID crisis that has gripped the globe. I would like to add that the resilience ...and constant hard work done by founder Chifundo Pedro plus his willingness to be amazingly versatile was the main reason this project was able to go ahead. ECA may be able to build services and systems for our Connections - but WITHOUT thier hard work to tell us "what" they need us to build we cannot accomplish anything. It was a pleasure working Chifundo on this project and myself / ECA look forward to our ongoing work in the future. - Paul Lang: ECA CEO & Founder

18.01.2022 First of just a few video's (curetly uploading - not long to wait folks!) we have coming up online from all the amazing Charity CEO's who took part in the ECA / Epilepsy foundation "International Purple Day 2020 Charity CEO campaign" that was run was by Dr. Nirmal Surya and myself. We also ran a LIVE conference (currently viewable online via ECA platforms) and will be having more ongoing video's documenting how charities / Epilepsy communities around the world are coping with... the current crisis. We will also be expanding LIVE online forums so that Charity CEO's, those from medical community and those from Epilepsy community themselves can have an "active role" in the global discussions we have about worldwide issues relating to Epilepsy, it's charity work and related research. A lot more information to come - but also a focus on giving people "more access and more of a say". Paul Lang Ecaceo

16.01.2022 Great to be working with CEO Chifundo Pedro & very excited about upcoming network launch for "Chifundo Epilepsy Awareness Malawi" #CEAM which will include: - new website with huge expanded features - expanded social media networks - new upgraded online services... - access to global Epilepsy charity networks Looking forward to the launch & great to be working with such an inspirational charity & CEO such as Chifundo

15.01.2022 EXTREMELY happy to say we have raised ALL funds required (I am sure she will need much mote support in her life - which I think myself as ECA CEO and Gideon and... EAU CEO will no likely support) AT LEAST for poor Mercy the abandoned Epilepsy child's wheelchair... NO WE AGREE she doesn't haven't a family or school or ongoing care... BUT at least she can move and do physio right?! We have to take thinks 1 step at a time we believe. ESPECIALLY in poverty. The 1st transfer of funds from GFM is already in process to Uganda (approx 60% / $200USD) is on the way and recently donated 40% / $150 x $USD will be sent in next 10 days. We would would like to place a HUUUUUGGEEE thank you to all donating party's. It is a difficult time in the world with current crisis - but fact people are still willing to work to donate to charities like this? With individual kids and people NOT actually effected by COVID but "other" conditions"? It is just a FANTASTIC sign that the world is STILL willing to work with Epilepsy and poverty... PLUS an amazing accolade to Epilepsy Awareness Uganda CEO #GideonRonie and his foundation. Great to have worked on this campaign - and more to come with the foundations NEW global network! Paul Lang: ECA CEO & Founder

15.01.2022 First of just a few videos (curetly uploading - not long to wait folks!) we have coming up online from all the amazing Charity CEOs who took part in the ECA / Epilepsy foundation "International Purple Day 2020 Charity CEO campaign" that was run was by Dr. Nirmal Surya and myself. We also ran a LIVE conference (currently viewable online via ECA platforms) and will be having more ongoing videos documenting how charities / Epilepsy communities around the world are coping with... the current crisis. We will also be expanding LIVE online forums so that Charity CEOs, those from medical community and those from Epilepsy community themselves can have an "active role" in the global discussions we have about worldwide issues relating to Epilepsy, its charity work and related research. A lot more information to come - but also a focus on giving people "more access and more of a say". Paul Lang Ecaceo

14.01.2022 AN UPDATE TO OUR "INTERNATIONAL PURPLE DAY 2020" CHARITY CAMPAIGNERS & PARTICIPANTS... WE HAVE QUICK UPDATE ON COVID19 EVENT AFFECTS. Let me begin by stating an ONLINE campaign with recorded events and live broadcasts this is not affecting us much IN THE SLIGHTEST we have just had to "tweak" a few factors of the overall campaign and alter some of Dr. Nirmal Surya's "Lotus House" event due to "live gathering restrictions" in India which will effect the "Stage 2 LIVE events" (s...lightly). So it seems even as an online charity event this virus can effect us... All of the worldwide charities that are currently involved (Stage 1 campaign or Stage 2 live event participants regardless) will be contacted with an UPDATED CAMPAIGN SHEET outlining some slight changes - mainly effecting the "Stage 2 LIVE events" and broadcasts. In VERY basic terms we will be broadcasting "Stage 2 LIVE events" to a smaller audience with a smaller timeframe... The original "10-15min with Q&A for each charity" design will be altered to a "LIVE online 30min session with all charities" where people will most likely give 3-5min posts with no Q&A (maybe a combined one at very end). A larger focus will be placed on the "Stage 1 recorded events" so we will be offering "extra" video opportunities outside the original "single major video campaign" to create a wider "Stage 1 Video campaign" with more social media and online marketing focus. Considering there might be many more people stuck at home in the near future this might be a good idea as we will have a larger online audience. So these are the very "basic changes" we have had to make to our campaign due to the COVID-19 virus and its effects on society. And maybe it will be nice if we can say "During the COVID-19 crisis we ran a worldwide charity event with people from all over the world by using the internet and collaboration... instead of being locked in our rooms we were out spreading messages all over the world." I think that would be a great story to tell one day. Paul Lang: ECA CEO & Founder https://media.giphy.com/media/jVYiOFxj9ocqoc5dyV/giphy.gif

13.01.2022 Lol... love all the new media systems - "Waynes World" was always one of my favourite movies

13.01.2022 ...next up we have the video from "Brainstorming Epilepsy Festival (USA)" CEO & Founder Stacii Floyd and his thoughts on Purple Day and the current events going on worldwide - plus his best wishes to everyone struggling from all corners of the globe. You can find the amazing work of Stacii and the Epilepsy Festival Foundation at "www.epilepsyfestival.org"

13.01.2022 Fantastic to be working on a new campaign organised by ASLEK CEO & Founder Dr Princo Kazadi from the Dem. Rep. Of Congo. His foundation cares for 45 children su...ffering from Epilepsy and the COVIS crisis has meant they are running short on supplies of both medication AND even food. Stopping children's seizures via seizures via starvation is NOT the ideal way to do it... Myself and CEO of "Brainstorming Epilepsy Festival" (USA) foundation Stacii Floyd are working with Dr. Kazadi to help raise funds to gain vital supplied for the ASLEK foundation. Yes it is a very tough time folks - but even a small donation can help bring a weeks worth of food and medication to these kids. They already have to worry about poverty, not having family, stigmas in their culture and a life of seizures... surely they should not have to worry about starvation too? Please help Prince, Stacii and myself with anything you can do. Paul Lang Ecaceo

12.01.2022 ECA WOULD LIKE TO COMMENT ON THE FACT THAT ARTICLES DEVOID OF MEDICAL EVIDENCE ARE NOT HELPFUL - AND MAY BE QUITE DAMAGING TO OUR COMMUNITY... I will simply leave to people to look up their OWN information in relation to the current COVID19 panic and how this "may or may not" relate to Epilepsy in some (or no) format. HOWEVER I have had this article sent me via enquiries numerous times now and would like to comment on THIS particular article and ones of similar structure. It ...is from a commercial entity that claims to be publishing medical information from the CDC but does NOT post any links to said medical information. The only links are to the "White House Task Force on COVID19" who is hardly the 1st place ECA would recommend for medical advice / research relating to Epilepsy or Neurology. It claims "10 conditions" such as Neurological conditions (Epilepsy included) put people at a "greater risk" to COVID19. However it does NOT note or provide links to: - Where this medical data was obtained / can be further researched by the public. - What these "increased risks" are? Contraction? Greater risks once diagnosed? Other? No specifics whatsoever. - How these "increased risks" might be lowered or negated by those with listed conditions. Now as ECA is not a medical research organisation we will leave to individuals to find their OWN information on this topic and will highlight we are not "confirming or denying" the claims made in the article. But we WOULD like to note that currently people of Asian cultures are experiencing mass racism due to the virus. They are having people refuse to shake thier hands or use thier businesses all over the world. We do NOT think that making blanket media statements like "Epilepsy increases the risk of COVID19" WITHOUT providing any medical research data relating to such claims is beneficial AT ALL. If the information is in any way correct then we need RESEARCH AND INFORMATION TO EMPOWER PEOPLE. Do we - as the Epilepsy community - want people to stop shaking our hands or using our businesses out of fear that "Epilepsy means we might have COVID19"? due to such panics caused by media statements like this? Paul Lang: ECA CEO & Founder https://www.mercurynews.com//10-medical-conditions-the-cd/?

12.01.2022 New networks for international charity groups... I music groups with Epileptic kids I have (conveniently lol) not mentioned... new music from some of my long lost mates... and some of of the best people in the world wanting to help Epilepsy via our network... I don't apologise for shutting up when it is required. It's called suspense and also doing hard work. Have some fun over next few weeks ECA followers and our Connection followers lol. Some stairways can't be bought... https://gph.is/g/ZWwDrGK

11.01.2022 Lol... love all the new media systems - "Wayne's World" was always one of my favourite movies

09.01.2022 Just a VERY quick post to ECA Connections OR any charities that have applied for "Purple Day 2020" - BUT more specifically the "LIVE Stage 2" events to be shown at Dr. Nirmal Surya's "Lotus House" international broadcast... Here is how things will work in terms of planning and scheduling YOUR event in terms of getting it "online and broadcast" to the LIVE event in India.... I posted a video as its FAR quicker for me than reposting emails or copy / pasting same text over & over again to people... Here is what will be happening.

09.01.2022 WONDERFUL TO SEE THE EPILEPSY CLINIC AND NEW #ChifundoEpilepsyFoundation OFFICES BEING BUILT! Always inspiring to see new projects like this being built by charities from all over the world that will assist and support people with Epilepsy in the community. ECA is thrilled to working with CEO & Founder Chifundo Petro to help him expand his charity globally via our free ECA Connection services and I only wish that I could fly out to Malawi today and actually give him a hand bu...ilding his new clinic! Paul Lang Ecaceo

06.01.2022 A great fundraiser being run by Fred Kiserem and the "Kiserem Epilepsy Awareness Foundation" in Kenya that I urge everyone to check out:

05.01.2022 EPILEPSY & STAYING HEALTHY CAN BE DIFFICULT... HERE'S SOME ECA FOOD FOR THOUGHT LOL Even if you're not suffering frequent seizures? Things like medication can effect you're appetite, sleep patterns and all forms of your physical body. BUT sometimes it is hard to focus on what might seem like SMALL issues by COMPARISON to your EPILEPSY on a day-to-day basis. "Yes I didn't eat properly, I haven't slept and I haven't exercised - BUT I didn't have a seizure today right?!"... The problem with this train of thought is that your sleep patterns effect your neurology, your food intake and physical health with effect your medication intake - and your overall physical "resilience" day-to-day will play a HUGE role in how susceptible you are to a seizure... So you may not have had a seizure TODAY right? WooHoo! Great work for today folks. But how you managed your physical health today will play a huge role in whether you suffer a seizure TOMORROW. It's not simple unfortunately. Now ECA does not sit here preaching to folks about "how to live their lives with Epilepsy"... as CEO I live with Epilepsy myself and I hate when others do that. ECA just likes to point out some of the Epilepsy struggles & things that might help. I have recently had my own Epilepsy medications changed so subsequently appetite just died & finding it really hard to eat... dropped 8kg in a week and down to 54kg as a 5'9 male (sigh). Trying hard but with these medications you just cant "force" the food down or it just "comes back up again"... It is very hard with Epilepsy medications to "stimulate" your appetite. But as I mentioned above - if you dont take physical care of yourself your body cant effectively ABSORB your medications so you need to eat / sleep / physically take care of yourself in order for these things to work properly... SO it was great to that a NEW restaurant with many of my "go to" foods just opened up within walking distance of my house recently. Although I used to be chef in my younger years (so love to cook) when you are not sure if you can eat you spend a lot of time - & money - living off take out or out of a frypan. I love the fact a new place has opened up with cheap food I love to grab when I'm "hungry BUT not sure if I'll eat" due to my Epilepsy - within walking distance of my house... Small things CAN make a big difference. Maybe a new food joint within walking distance of my house that serves the "go to" I eat when my appetite is acting up? Can help me gain some weight and assist my medication absorption. Or at least save some time & money by stop throwing so much good, home cooked food in the bin at least?! www.tazet.com.au Paul Lang: ECA CEO & Founder

04.01.2022 We do all need to remember it all takes retrospect lol... I only do what I what I do toady with my foundation after yers of screaming at myself in a garage to rick music after countless seizures... ...and that motivated me to start a charity. You never know what parts of your life are actually going to be the "dark or light" sides of the force until they play out over time. Paul Lang ECA CEO and Founder

04.01.2022 Always wonderful to get messages of praise about the work of ECA - but especially when it is from someone like Torie (CEO of Epilepsy Sparks "www.epilepsysparks.com")... who has helped me build ECA from day 1, and has been a great guide and friend to me on the path of creating a charity. I am quite sure ECA would not be what it is today and I would not have been able to accomplish the things I have as ECA CEO without the insight & support Torie has given me over the years int...o what it's like running a charity. Thank you Torie... Inspiration definitely works both ways.

04.01.2022 Hello this is Paul Lang, CEO & Founder of ECA. I am writing a letter to invite YOUR charity to take part in the International Purple Day March 26th event being held by the worlds largest and most respected Epilepsy charity Epilepsy Foundation. In THIS case ECA is assisting a campaign to help Epilepsy Foundation (India branch) promote the AMAZING BUT SMALL events held by charities worldwide by many charities - every year for Purple Day. WE WOULD LIKE TO INVITE YOU TO J...OIN OUR GLOBAL EVENT ALL YOU HAVE TO DO IS FILM SOME FOOTAGE OF YOUR CURRENTLY PLANNED EVENT? THEN SEND IT TO US FOR A WORLDWIDE CAMPAIGN. Details about the MAJOR event and how YOU can take part International Purple Day is held on March 26th and most Epilepsy organisations celebrate this in some way. They may be holding a public event, a personal event, or an event just for their charity volunteers? BUT these events will NOT be huge with massive funding and THAT is the point of THIS campaign. We wish to promote the grassroots events of smaller Epilepsy charities from around the world into a WIDER and globally promoted CAMPAIGN. We want the WORLD to see smaller charities amazing work. WE WOULD LIKE TO INVITE YOU TO JOIN OUR GLOBAL EVENT: ALL you need to do to participate is meet following (very simple) requirements: 1) Hold your own kind of Purple Day March 26th event in ANY form you like and be able to gain 3-5mins video footage of that event to be shared online. There are no requirements such as what you wear or logos. 2) Register for event and take part in an online video chat and forum (being run over 24 hours) relating to the campaign to discuss your event about 1 week before March 26th. ECA will assist you to connect. 3) Send us any images / logos / promo material you have that could be used to promote your participation in the event. ECA will edit video / images then Epilepsy Foundation will promote via global campaign. 4) You dont need to do much more than that. ECA & Epilepsy Foundation are simply trying to promote the FANTASTIC work you already do at grassroots level to the world. Just film it and we will create videos / promote it FOR FREE via this global campaign. Further details will provided upon full registration. To be 100% clear as with all ECA events there are NO FEES and you have NO OBLIGATIONS. All you have to do is be able to provide some footage of whatever "grassroots Epilepsy charity event" you are holding? And we will do the rest. Please direct any enquiries to ECA at "[email protected]" tagged under title "Purple Day 2020" for immediate & specific response from our team. https://media.giphy.com/media/dBmXhqTB7bUzUTuQ95/giphy.gif

02.01.2022 Test 3:2 - mediaGIFdirectshare1

02.01.2022 A great thank you to the "Earth to Bottle" group for posting such kind words about myself and ECA's Connections Fred, Chifundo and Gideon. It is a great help to have any public spread of our work especially now Chifundo has his new website and online network operational plus a GFM campaign on the run. My thanks to group managment for this lovely post and hope we can have even greater success stories to share with you as we assist these charities expand. Paul Lang: ECA CEO & Founder

02.01.2022 EPILEPSY & STAYING HEALTHY CAN BE DIFFICULT... HERES SOME ECA FOOD FOR THOUGHT LOL Even if youre not suffering frequent seizures? Things like medication can effect youre appetite, sleep patterns and all forms of your physical body. BUT sometimes it is hard to focus on what might seem like SMALL issues by COMPARISON to your EPILEPSY on a day-to-day basis. "Yes I didnt eat properly, I havent slept and I havent exercised - BUT I didnt have a seizure today right?!"... The problem with this train of thought is that your sleep patterns effect your neurology, your food intake and physical health with effect your medication intake - and your overall physical "resilience" day-to-day will play a HUGE role in how susceptible you are to a seizure... So you may not have had a seizure TODAY right? WooHoo! Great work for today folks. But how you managed your physical health today will play a huge role in whether you suffer a seizure TOMORROW. Its not simple unfortunately. Now ECA does not sit here preaching to folks about "how to live their lives with Epilepsy"... as CEO I live with Epilepsy myself and I hate when others do that. ECA just likes to point out some of the Epilepsy struggles & things that might help. I have recently had my own Epilepsy medications changed so subsequently appetite just died & finding it really hard to eat... dropped 8kg in a week and down to 54kg as a 59 male (sigh). Trying hard but with these medications you just cant "force" the food down or it just "comes back up again"... It is very hard with Epilepsy medications to "stimulate" your appetite. But as I mentioned above - if you dont take physical care of yourself your body cant effectively ABSORB your medications so you need to eat / sleep / physically take care of yourself in order for these things to work properly... SO it was great to that a NEW restaurant with many of my "go to" foods just opened up within walking distance of my house recently. Although I used to be chef in my younger years (so love to cook) when you are not sure if you can eat you spend a lot of time - & money - living off take out or out of a frypan. I love the fact a new place has opened up with cheap food I love to grab when Im "hungry BUT not sure if Ill eat" due to my Epilepsy - within walking distance of my house... Small things CAN make a big difference. Maybe a new food joint within walking distance of my house that serves the "go to" I eat when my appetite is acting up? Can help me gain some weight and assist my medication absorption. Or at least save some time & money by stop throwing so much good, home cooked food in the bin at least?! www.tazet.com.au Paul Lang: ECA CEO & Founder

01.01.2022 Boy, that escalated quickly lol...

01.01.2022 Very humbling to have been able to keep this project and running and not have to cancel event like so many other charities have had to do recently due to current crisis. Dr. Surya has been amazing with his resolve to work with myself / ECA to make sure we kept thing running (even in an online format) and the drive and ambition shown by ALL of our charity CEO's who took part was just amazing. Thank you to everyone involved and obviously this was just the first part of a wider ongoing campaign I hope you can all keep participating in. Now we have group networks and platforms set up should be much easier too - Paul Lang Ecaceo.