Rett Syndrome Awareness Month & Army of Us

Army of UsI know that Awareness Month is tough. It’s a constant barrage of everything Rett syndrome which can suck the life out of you and the people connected to you. You’re under pressure to do more, say more, share more and be a bigger part of Awareness Month.

Why is Awareness Month so important though?

Awareness Month is not for you and me, it’s not for the people who live with or are directly connected to Rett syndrome. We live through 12 months of awareness every year.

Awareness Month is for all those people who have no idea what Rett syndrome is, and/or all those people who have an “old” understanding of it. Those are the people we are trying to get out to.

In the Army we “Dream Big”, that’s because we have a big goal.

So we need you. We need you to share whatever you can this month, to make a big deal, because Rett syndrome is a big deal.

We need you to generate as much awareness as we possibly can. We thought the best way to do this was to equip people with the tools they need to SHOUT.

Not just our message, or even not our message at all, just share the message of Rett syndrome from whoever you want to, but please share.

Army of Us is about supporting people and raising awareness, with whatever you need to tell the story of Rett syndrome, not our story, your story. About giving our friends, families and supporters the targets they need to feel like they are making an impact.

Why is it an “Army”?

We believe that this is a fight, we have to fight to be heard against bigger better funded charities, diseases and disorders. We have to stand together to share the message, because division helps no one. We have to fight against the old concepts of Rett syndrome and re-educate people about what we have discovered, what has changed.

We need to be smart about it, we can’t be afford to be divided and spread across social media, all making tiny ripples in this massive pond. We should to stand together to make a concerted splash.

So what are we doing to change this?

Army of Us is working with a bunch of charities, and loads of families to create and generate social momentum. Through whatever system we can, we will talk to anyone who will help and support our cause. As a rare disease, we’ll take any help we can get.

Any charity can ask us for help, and we will and already have been helping.

We make birthday cards

Plain and simply, our priority here is the girls (and boys) with Rett syndrome. Anything we can do to make them feel special is all that matters. It’s not about awareness, it’s not about raising, it’s focused purely at making something that truly means something to them. Every card is unique, every card is custom made. Every card is special for us, and we hope for you.

We make graphics

Pictures that tell your stories, pictures that you can use to tell the story to others, pictures that tell you about Rett syndrome, but then also pictures that tell you about the people it affects.

We write blogs

Blogs to help tell the story, blogs to give ideas, and blogs that explain what is happening in Rett syndrome.

We make designs

Designs that you get printed onto T-shirts for your events, for the the people and friends that support you. I’m going to add a tribute to all those people who’ve been working their butts off getting our message out there and share some of the designs we’ve been responsible for.

We sell merchandise.

Our merchandise is the best quality stuff we can get our hands on, because we want to make things that show the love, care and attention we put into everything here. These objects represent our dedication to people affected by Rett syndrome, and we think they deserve the same love, care and attention.

All our merchandise is currently self funded, that means we don’t get big runs and can’t do as much as we would like, but hopefully over time that will change. One thing we are here, is patient.

Our merchandise options work in two ways.

Supporters (We <3 our supporters)

People who support what we do and come into the shop, or send friends to the shop to purchase 1’s and 2’s. We sell these items at a very reasonable price, the profits of which go back into replenishing stock and establishing new merchandise lines.

Fundraiser Packs

Are designed to help you create awareness at your events. Fundraiser packs are sold to you at cost, the cost it arrives to us at. Plus the shipping cost.

What happens with the money?

What money?

Currently Army of Us does not raise money, we leave people to whichever cause or charity is connected to their need to raise money for. So if you choose a hospice, a Rett syndrome charity or your child’s needs, like an eye gaze or standing frame, that’s your choice, and we totally respect that choice.

The people that make up Army of Us all have their “own” preferred charities they choose to support. Many of us support multiple charities.

No one profits out of Army of Us, we are a non profit and our books will be made available to anyone who requests to see them. The margins on the merchandise are so tiny, they barely cover the cost of the items.

Everything else we pay for.

That doesn’t mean we’re immune to accepting funds, we dearly appreciate it, because it means we can do more.

We have new merchandise lines that are being funded by anonymous donors, we are also happy to give credit to anyone who would like to fund a line. If you would like to do or give something, then please contact us

Our Pledge

If we ever do make a ton of money, rest assured every cent of it will go to Rett syndrome research, because just like you we are affected by Rett syndrome. Like you the most important thing to us is a cure.

This is what we can give, we ask no more of anyone else. Give what you can.

Here’s to a successful Awareness Month, for everybody. 

Thank you


Here’s that link I promised, I’ll be adding more as I can 🙂

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