Hi Im Carys

Rett syndrome Awareness Month 

Why it’s important.

The only way we will truly disrupt socially, is when we all share the exact same thing.

This is a hefty read, here’s a summary.

I will talk about :

It's no secret. I'm proud to be an advocate for Rett syndrome
  1. Inclusion, it’s more than just people living with Rett
  2. How going viral made a charity $50 Million
  3. New Diagnoses
  4. Bad information
  5. Good information

1. Inclusion

Army of Us has always been about inclusion, in the last couple of days I asked people to give us a little feedback about what we do for them. We are primarily an Awareness group, that is our function.

Awareness Month is the opportunity for everyone to be included.

I was so thrilled with all the replies, but I think this reply summed up everything we hope to achieve as a brand within our community. Thank you Ronda.

Ronda Trester Does Army of Us help our Rett Families with Awareness? Absolutely!
Inclusion: Not once have you forgotten to help spread awareness that Boys can be born with Rett too, not once have you forgotten to remember the children/adults we have lost to Rett, heck you also remember to help our families to spread awareness for those with Down Syndrome, you also reach out to all of our families to include them in your picture collages (which by the way is always beautiful)
You Listen: one of my favorite posts comes to mind - She's in the room. You help spread awareness that our Rett children/adults are SO smart! Just because they can not speak doesn't mean they do not understand
Compassion: No matter how busy you are, you always make time for us when we need something
Awareness Fact Cards: Love them! Let's be honest, we are tired, you are tired. But, here you are making sure we have handy, easy to explain facts to share. You also make them for families in various languages so they too are included
Picture Frames of our kids that explain scoliosis, seizures, long qt, eye gaze, etc all in one picture: Again, beautifully made and explained. I know that takes a lot of time making them for all of our families
Your awareness posts help us tremendously. Knowledge is power. We can't always fundraise and people can't always give. Especially since we have fundraised for a decade. Sometimes, awareness is all that we can do. Thank you Army of Us for all that you do! Not only for my family, but for every family out there. We never feel alone with you in our corner! We love you!

Let me take you back to that word inclusion, because that is almost everything you need to understand about Awareness Month

Inclusion is not just something we are fighting for our boys and girls with Rett syndrome.

That’s what Awareness Month is, the opportunity for EVERYONE to BE INCLUDED and do something, regardless of how much money you raise, or how important you are.


If you want to read more comments about what we do and how we help, here are links to all the replies. (I will include other quotes too)

Duncans post on with the Awareness comments
Army of Us post with Awareness comments

Why for 1 month of the year?

We need social momentum.

You don’t get that by spreading little messages in small networks.

I see people saying “I create awareness throughout the year.”

Here’s the thing. You don’t.

With the utmost respect, you don’t. Neither do I.

Social networking is a numbers game and speaking to your network is what it was designed for. Your message never extends beyond that network.

It’s part and parcel of your social conversation, unless everybody engages with one of your posts, it does not extend beyond the boundaries of your social network.

I don’t think that’s a bad thing because these people are your support network, I think it’s an incredibly important thing. These people are the ones who will babysit, fetch and carry, be a shoulder to cry on or a friend to laugh with.

For Rett syndrome to get social momentum, you need to extend beyond the boundaries of your network, and that means many people need to share the same thing.

Not just many people. We need people who are not in our social network to share that thing for it to exploit the algorithms Social Media companies write, in an effort for that message to go viral.

2. Momentum : Let’s talk money

Social momentum is how you exploit the algorithms that control the friend networks.

Remember the ice bucket challenge?

It raised $115 million for the ALS Association.
It raised $220 million worldwide for the disease.

1 in 50 000 people gets ALS/MND that makes it 5 times rarer than Rett syndrome.

A disease with a far smaller network than Rett absolutely smoked social networking, not only did it raise inordinate amounts of money, but it generated huge amounts of awareness.

Awareness that has continued raising money ever since.

More people are running events, getting sponsorships than ever before. People who are not connected in some way to MND/ALS are choosing to do things for the victims of it.

Massive corporations are aligning themselves with ALS/MND.

Let’s have a little comparison of the impact before and after the Ice Bucket challenge

The ALS Association received $41.8 million in donations from more than 739,000 new donors, that figure continues to grow.

Since the ice bucket challenge they have been averaging $75 million/year
Prior to the ice bucket challenge they averaged $55 million/year

How is this awareness you might ask?

*Don’t believe me, I’m going to cut and paste from Wikipedia

According to The New York Times, people shared more than 1.2 million videos on Facebook between June 1 and August 13 and mentioned it more than 2.2 million times on Twitter between July 29 and August 17.

At its peak, the challenge generated more than 70,000 tweets per day with hashtags such as #IceBucketChallenge, #ALSIceBucketChallenge, and #StrikeOutALS.

Prior to the challenge, public awareness of the disease (ALS/MND) was limited; the ALS Association stated that prior to the challenge going viral only half of Americans had heard of the disease.

After the Ice Bucket Challenge went viral on social media, public awareness and charitable donations to ALS charities soared.

This alone should be enough to help you understand why October Awareness Month is important, but I’m going to give you more reasons.

And at the end I’m going to tell you how we could generate our own social upheaval.

Sidetrack : Here is an example of how awareness attracts the corporate market

Hector Minto I've always loved the concept of Army of Us. To me it's everything that's good about social media (in amongst a whole lot of dross). You created a positive beacon for families to find and create their own critical mass of expertise. Back when I first came across Rett Syndrome, it was clear that the educators and therapists were not engaging, there was no presumed competence and a general acceptance that communication was not going to happen.
Army of Us gave me a route to engage. I met cool, positive parents wearing their hearts (and their stripes) on their sleeves ready to listen to new approaches...and that is what got eyegaze going (and won over the doubters in time). There is NO WAY that would have happened otherwise.
I remember you all and the many tears and hugs as kids played, created and communicated. It was a privilege to be there...and to now watch from a bit further away as your kids continue to show what they're capable of. More power to you Duncan. You created an amazing way for people to reach each other.
Now hit me up for a few more t-shirts!

Who’s this Hector guy?

Hector was critical in how the Rett communities journey into Eye gaze devices started. He’s now a Senior Technology Evangelist at Microsoft, evangelising INCLUSION daily .

Hector has been pretty important to Rett syndrome. You can follow him on twitter right here : @hminto

I met Hector through Cure Rett and a fantastic awareness campaign called Hello!

Hello was all Elizabeth Halford’s work. It was, and still is to this day, the most successful Rett syndrome campaign ever run.

She deserves credit and thanks for that.

You can find Elizabeth here www.graceforrett.com/

The Hello campaign was the only time Rett syndrome has ever gone truly viral, it was a true showcase of what this community could do if we worked together.

Picture of Carys, a young girl with Rett syndrome, sitting in her special high chair looking at the screen.

I was
An example of the Hello campaign

That campaign didn’t only spark prolific sharing in our community, it got copied, not just by other Rett charities, but by much much bigger charities than anything we have in Rett syndrome.

People outside of our community could see the brilliance in it, but we stayed blind to it.

Elizabeth showed us we (Rett syndrome) could be much bigger than we think we are.

It was an Ice Bucket moment.

There is no reason why, if we work together, we couldn’t have an Ice Bucket moment again.

We have talent in our community, letting people express it is a gift we can give them.

3. New diagnosis : Why awareness is important

New people are diagnosed everyday, it imperative for their health and the health of their family, that we get then to the right support networks providing the right information straights away.

These families need SUPPORT first and a plan to help Rett syndrome after.

Why awareness is so important for families who’ve just got a diagnosis.

In a new world we can reach out to them and help them immediately, put them in touch with right people.

Remember Diagnosis Day?

We have the chance to cushion the fall, to lift them up off the floor.

To show them that they will still smile and laugh, and in find a whole new world of support. I really stress here, SUPPORT, it’s operative that we start these conversations helping families to find balance.

We need to help them, not ask them for HELP!

Most importantly we will get them in front of that curve of learning, so they are implementing strategies and raising for the right things straight away.

The earlier you get involved, the easier it is to lay down the right learning structures to move forward for your child.

Jamie Gaunt Book Army of us was one of the first page I joined after getting diagnosed. You do a wonderful job helping us Rett parents to spread Awareness. Your campaign this year was amazing. Thank you for all you do for all the Rett families. #Armyofus #Rettstrong 💜💜
Duncan here's a reminder of the impact you have an our families and especially my Audrey.
I met Jamie, and her daughter Audrey, when I spoke at the Girl Power to Cure Event in Orlando.

There is nothing more powerful than having a positive impact on new diagnosis

FYI : Audrey is a pickpocket, she totally stole my heart.

4. Bad information : How Awareness corrects it

The information about Rett syndrome on Google is bad.


I used to say Google Rett, I never say Google Rett anymore, because quite frankly a lot of the information out there is bleak and horrible. It’s a terrible and often badly informed introduction to Rett syndrome.

As you well know, Rett is different for every one, it is also variable, it is not always bad for everyone. (Caveat, it’s never good for anyone either, but there are good days).

Where is this information bad?

There is so much stuff we have learned about Rett recently. The outcomes of these learnings are not invested in or are ignored by Rett institutions. For example the Eye tracking communication devices.

I would go so far as to say that eye tracking is possibly the most important discovery in Rett syndrome since the gene (this is my opinion).


Because it’s here. Because it offers access.

It’s not easy, it doesn’t always work, it costs a lot of money for the device and a lot of time and money to learn how to use it. I also think it’s very much worth the effort.

Awareness has been the number 1 tool in helping parents access these marvellous devices and techniques/people who can help you use it.

5. Good information : Explained in a simpler way

Ret2 syndrome is not complex, the way we talk about it is.

It is our biggest fault as a community, we high brow everything (it’s a clever was of saying we use big words – and that’s actually stupid)

Sorry if I just called you stupid.

I was stupid too.

For 8 years I said this “Children with Rett syndrome go through regression, often losing the ability to perform learned actions.”

Regression, perform, learned actions?

Who speaks like that? I tell you who, Doctors.

Not doctors speak like this….

“People with Rett syndrome often lose the ability to do things they might have already learned and done. Like walking and talking”

We learned this, and we changed.

Sheryl Hand I have had family members tell me that the post help them understand Angela's life, and our life, better. Easy to understand and not to much "medical terminology"
Love you guys and gals and thank you for the hard work and dedication you give
And this was the outcome. This has been the most common theme in the stuff we have made this year.

Thank you for making it simple.

Good information is not just for families, good information is for professionals too. Far too many people in our professional network live off old information .

Take for example Boys with Rett syndrome.

We’ve run a little campaign for the boys this year (We are so happy we did)

Almost every parent has the same story to tell, the professionals all told them it wasn’t Rett syndrome, boys don’t get Rett.

Guess what.


Picture of Henry and his Dad.
Meet Henry. He has Rett syndrome.

Rett syndrome does not define Henry.

It explains the story in a meaningful, human way that resonates with people. A way that helps them understand and feel empathy and want to be involved.

What does Awareness do?

Social upheaval (Disruption)

Army of Us has been doing it for quite some time now, but why should you believe me?

Here are some stats from Army of Us for awareness month – this is not to boast, rather to illustrate how important what we do socially is.

We are not quite where the IceBucket challenge is 😉 but we have managed to break into the bigger pools on a number of occasions.

Ever wondered how Army of Us got into your feed? That’s because we used engagement to jump across from a shared friends network.

Here’s how:

  • Our engagement per week averages at 15k (likes & shares)
  • Our network penetration per week averages at 60k accounts. That’s 60k off a tiny page with a small like base (5k).

Facebook insights show that Army of Us has greater engagement than the top 5 Rett charities combined

That means that our little 5k base is outperforming a 100k collective base.

Our engagement is 340% greater than our user base.

It also means we extend beyond our like pool, where other organisations are only reaching a percentage of their like pool.

We are the only Rett syndrome representatives extending our reach beyond our base. As a community, we have to change that.

Here is the screenshot from Facebooks insights, and if you’re thinking, that’s not important. You are wrong it is, that what this whole blog is about.

This stuff should be important to you, especially if you’re a big organisation.

Army of Us’s social success is not an accident.

Justin Schroeder When it comes to spreading Rett Syndrome Awareness, my first thought is always Army of Us. We all know that without awareness, there will never be a cure, so spreading the word to others is SO important, particularly during October's Rett Syndrome Awareness Month. However, it is really hard for us Rett parents to find the time to come up with the facts and graphics to make the kind of impact Rett Awareness deserves (not to mention most of us don't have the talent or skills needed to do it). Thankfully, Army of Us is there to provide us what we need, and make it easy to share the information.
If you want to sell something, you need to market your product.
Is to time we started treating what we do like a business?
To hire clever people to do clever thing?

How do we know how to do this?

This is not the first time we’ve done it, we did it with Cure Rett too.

It’s a product of planning and understanding what is important to our audience. Most importantly keeping in mind that social networking is a conversation, it not just standing on the hill and shouting.

Every year we learn and evolve. The following year our stuff is better and cleaner, our message is more tailored.

We would love to help any Rett organisation who wants help with that.

Honestly, talk to us, we won’t charge you 😉 We don’t get paid for this. If we did, it would probably be in cake 😀

How does what we do benefit Rett syndrome?

People are busy, if you have a child with Rett syndrome, you’re probably doubly busy. You’re out there fighting for things that help you make their lives (and yours) a little easier.

Everything we make is made to be used and shared.

Printed for your events, on posters, flags, cards and tees.

These “assets” are designed to help you tell the story of Rett syndrome, you are welcome to use them.

You are more than welcome to add a call to action for your favourite charity to these images.

We’ve made thousands of posters, pictures, blogs & stories, we’ve even designed merchandise for families.

Real disruption – What can we do?

I’m not here to tell you have to generate awareness. You’re already dealing with Rett, that’s enough for me.

The only way we will truly disrupt socially, is when we all share the exact same thing.

1 shared thing could literally change the destiny of Rett syndrome.

Like the ice bucket did for ALS

Pramod Sonne I never even knew this illness existed until I saw Army of Us awareness campaign. I was so inspired by people who tirelessly contribute, the incredible parents who are so resilient. It made me realize that many of the problems I thought were so big in my life were actually completely irrelevant and insignificant- and it got me off my butt helping people.
I find this entire community to be nothing but inspiration. 🙏🏽❤️

You can find Army of Us and all our stuff we do here www.facebook.com/Armyofus/

I am proud to be an advocate for Rett.

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