ysuNetwork

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#ysuNetwork

The #YouSeeUs
Network

You might have noticed us use #ysuNetwork here or there in our online posts. 

Now, we want to explain to you exactly what we mean when we talk about building a new online #YouSeeUs Network and why we want you to be part of it. 

The first thing you need to remember is we're not-for-profit. 
And we will never ask you for personal donations. 

We’re not talking about the bigger charities and organisations.

We’re talking about people who have been forced to become activists, who carry on their fight online, attempting to help themselves and others. 

Yes, we are working towards a goal that we hope will raise a lot of cash - half of which we want to give to people who need life-changing or life-saving surgery, treatment or equipment, and the other half we want to invest in…

...We don’t want to give all our everything away just yet, so that's a secret we're going to keep - along with how we're going to do it.  But, we are going to tell you more about our overall vision and mission in this special project feature. 

For more of an idea of the exact ideas behind the Network, the name and the project, check out out open letter from the person who came up with #YouSeeUs in March 2016 and Hashtag Hullabaloo to find out why hashtags are so important for the Network. That should give you a more complete understanding if there are any gaps once you’ve finished reading this. 

Now you know that we’re not trying to make money through donations and we’re not asking for donations from you, we hope you’ll relax and immerse yourself what we’re trying to achieve. 

The Network has two prongs:
  • The media in YouSeeUsmedia
  • Our currently locked ‘promote’ section on youseeus.org. 

YouSeeUsmedia 
  is the awareness-raising, 
video-making, 
photograph-taking,
vocal side of 
the project. 

Two-pronged Attack

YouSeeUsmedia is the campaigning, awareness-raising, video-making, photograph-taking, gob-on-a-stick side of the project. 

We know there are countless blogs, websites, forums, YouTube channels, organisations and groups who are all broadcasting the same basic message - We. Need. Help.

There are so many of us out here trying to be heard and use our voices to create the changes so many of us need so desperately, whether it’s because of Ehlers-Danlos, a Hypermobility Disorder, Dysautonomia, Gastroparesis, Craniocervical Instability, Fibromyalgia, Endometriosis, Cerebrospinal Fluid Leaks, Idiopathic 
Intracranial Hypertension, Epidermolysis Bullosa, Neurofibromatosis, Chiari Malformations, Tarlov/Perineural Cysts, Dysmotilities or any of the other Illnesses that blight our lives. 

We’re not talking about the bigger bodies, charities and organisations. 

We’re talking about the people who have been forced to become Expert Patients and activists, and who carry on their fight online, in the attempt to help themselves and others. 

There are many of us using our voices and doing our best to raise awareness and right the wrongs of the Medical Field. 

Equally, there are many of us who feel powerless to do anything to make the Institutional Abuse stop. 

We believe that by unifying our voices, sharing the same messages and stories, in a strong and synchronised fashion, regardless of the specific illness or disabilities involved, we can unify and amplify those messages, and one-by-one, case-by-case, we can move together as the #ysuTribe and Network, to work as a tide to make sure we’re all heard. 

How do we do this?

Our Patient A page gives you an insight in to one example of us all working on the same one story before identifying and moving on to the next. Remember Melanie's Mission To Live? 

The fundraising target could have been reached (and Mel could have been saved from years of seizures and suffering) if an entire network of us coordinated our use of hashtags and sharing and posting of content coming out of that campaign. 

Once we've nailed one cause, we all agree to cover other issues or stories that need help or exposure, and so we keep moving on as an organised collective.  You bring stories and campaigns to us, we share some with you, and we all work together.  

One powerful Hive Mind.  After all, Spoonie* Solidarity = Spoonie* Power.  

We’re offering space and quality editorial written by #ysuWords. 
All for free to Tribe and Network members. 

Our Side Of The Deal

As part of the Network, and to make it identifiable, we want members to use a specific graphic or slogan on their social media, as well as the usual linkbacks to youseeus.org when certain material is used (free of charge). 

But we want to give to you too. 

Our Spotlight area is designed to give attention to any group, cause, campaign, story or issue that needs prolonged exposure. 
Our Spotlight area is designed to give attention to any group, cause, campaign, story or issue that needs prolonged exposure.  We’re offering online space and quality editorial written by #ysuWords. 

#ysuImages are happy to help smaller groups by making graphics and videos for them, to help them spread their individual message, as well as giving banner space and editorial space on our website - free to Tribe and Network members.

We will support your social media and online activities through sharing, commenting and telling others about you.  Of course, we need the same in return.

If you’re an aspiring or new writer, our HEDS Up! Editor will also give you pointers and polish your written pieces before we post them on the website and then promote them across our social media.  Perfect if you're building up your portfolio.

If you have a blog, website or social media following, you have the perfect tools to join the #ysuNetwork and be part of a jigsaw that is shouting out the same headlines from the bigger picture

We can band together and become our own News Agency, setting the agendas that best serve us and our children.

No Presence? No Problem!

You can still be an active part of the Network without having a blog, YouTube channel or website. All you have to do is keep an eye on our Facebook, Twitter and YouTube pages - and the website - and share stuff. 

We don’t just share links to our creations, we also link to lots of other small and independent groups to help drive their numbers up and to bring you varied information from around the world. You can be an Online Activist even if you’re stuck in bed!

People who don’t have any Illnesses can join the Tribe and the Network in the same way, and using #WeSeeYou and some of the other Network hashtags when you share things about Invisible Illnesses and Disabilities is one simple way to do that. 

Joining our closed Facebook group - #ysuTribe [Undercover] - is another easy and great way to get involved in the project and it’s a prerequisite for being an official part of the Network and getting all the perks! 

Again, we’ve written a little something all about our closed group, so you know what you’re getting yourself into…

 Promote

The second prong of the #ysuNetwork is our currently locked ‘promote’ section. Think of it as a directory we want to cram full of not only links to useful and entertaining blogs, websites and organisations, but also links to #ysuTribe member’s independent online businesses, services, portfolios and creations. 

Your promote listing could link to your Invisible illness blog, website, group or campaign, but it could also take people to your etsy store, independent project or even just a passion of yours that you want to develop. 
You might be a photographer looking for a break, or a film-maker, singer, poet, actor or artist…Whatever your passion, if you’re an active member of our closed group and share things from our main open page and this website, or if you regularly post your own stuff using our project hashtags, then we’ll make you a listing and even write a promotional page about you to go in our Spotlight. 


To get your free promote listing or to ask any questions, email marketing@youseeus.org [subject : PROMOTE].

It's time for #ANewKindOfFight.

written by #ysuWords

 © 2021 for syndication permissions, email media@youseeus.org
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