Rett Syndrome Awareness Month

It’s a time of year to talk about something that not enough people know about, Rett Syndrome. October is Rett Awareness month. If you know me and you don’t know what it is, I can only assume you’ve got me on ignore.

This post is not just about Rett Syndrome awareness though, it’s also about your social conscience. 

My link to Rett Syndrome is in the form of my God Daughter, Carys, who was diagnosed with Rett Syndrome. Her father, James, and I have been best friends for many years. I’ve spent some time now doing things for this worthy cause(Rett Syndrome), anything I needed to do raise money and awareness. So far I’ve had fantastic support from my friends, family, colleagues and my company, who’ve all donated generously to all our efforts. Not only money, but time, caring and fund raising efforts of their own.

I’m tremendously grateful to all my friends and family for their support, they’ve been so generous, I love you guys.

At the same time I’ve discovered how difficult it is to consistently raise money from the same group of people, who have their own lives and families to deal with. I feel quite uncomfortable going back to them with my hand out, asking them for money to help find a cure for Rett Syndrome, over and over again.

With that in mind we thought (James and I) we could sit down and look to use our different skill sets to help find new networks and/or businesses who would be willing to help out. Bear in mind I now have 25 years of experience in Brand and 18 years Experience in Internet and surrounding technologies, I like to think I know my stuff. James has equal amounts of experience in Programming, Internet and Mobile technologies. BUT we weren’t just satisfied with what we knew, we started attending seminars and talks on the subject, specifically with charities in mind. We spoke to almost every charity person we could get our hands on(My business has many varied Charities as customers).

There were many things we liked about the existing charities in the community, but the one thing they were not doing is getting the message out there(to the public). These charities are almost exclusively funded and supported by funding circles, groups of parents who constantly raise money through their circle of friends and families or it’s grant based. These parents are doing a fantastic job, I know, I am friends with one(Many, many more now). They raise an awful lot of money for a very important cause, a cause that has no celebrities, a cause that most people haven’t even heard of. Even though Rett Syndrome is much more common than you think(1 in 10 000 girls are born with it every day). Why haven’t people heard of this terrible disorder, why did it take it happening to the child of my best friend for me to find out about it? 

As a charity, you’re not competing with the same community for mind share, you are competing with other charities out there big and small. We (as a community) desperately need to generate awareness, we need more people to know what Rett Syndrome is, and what we need to beat it and/or help support those who are affected by it. I don’t just mean the people who have Rett Syndrome, I mean all the families and friends that have to deal with the repercussions of this debilitating disorder.

James and I discussed it at length, at work, on massive walks, on weekends, at night, on Facebook…whenever we had the opportunity, we constantly discussed it, we needed a strategy to change this.

Our first step was to try and instigate the change required within the existing organisations about what was needed to create a more cohesive message, a message that doesn’t need you explain a complicated disorder and then explain a complicated name. Our second strategy was how can we affect change in our “Brand” to make us more appealing to the board room executives, as this is a network we desperately need to further our goals. Finally, we thought it massively important to be able create a vehicle which would allow the community, to effectively get, use and deal with any requests that would help us further our goals.

Sadly, it didn’t work out as we planned, for reasons beyond our control, none of our ideas were implemented. Not only were none of our ideas implemented, but essentially we were sidelined and left to continue raising money through the traditional vehicle, funding circles.

By this time, our networks were thoroughly tapped, we found it harder and harder to achieve the goals we set out to achieve.

We were left with a decision, do we continue to exist in the dead zone, with no power to affect the change we desperately think is needed, or do we look to create something we can put all our energy into and try be the best raisers we could possibly be. 

It was an obvious choice in the end, even more so when we started bumping into other like minded parents.

Almost every single person I’ve had the pleasure of meeting since I started on this journey has been amazing, none of what I do or did is meant to hurt them. Rett parents share a common strength, the disorder demands it, you need a lot of spine to stand up to it. It makes them stubborn too, they just don’t give up, they’re loyal and they’re very protective. It sometimes also makes them fiercely difficult to deal with, not because they mean to be, but because of who they are. For me, ALL that I am interested in creating greater awareness, through which I hope we will access the people we need to reach our goals. I hope to do this by using the skills I have spent years honing in boardrooms around the world and the passion I have for the cause.

It drives me to the point where I wake up at 5am every morning, I do my tasks which include making Avatars for our Facebook page, creating the new pictures needed to run stories on children with Rett Syndrome for the day. Communicating with parents from all over the world, supporting people and generally discussing strategies and tasks for the day with the rest of my trustees. 

I then go to work. On the train to work I absorb Facebook, I say absorb because I scour it. I look to see who needs help, who’s birthday it is, who’s messaged me and who’s messaged the charity. I look for stories to share, I look for people to spread the message to.

I go to the office and I do the day job I am paid for, thankfully I have a fantastic boss, who not only allows me to be consumed by this, but also supports me and us(Cure Rett), by doing challenges for us, by donating the money to buy wrist bands, by cycling around Europe for us and by being a good man.

At lunch time I check Facebook, and update it.

On the train home I update Facebook, and then when I get home. I make the pictures and write the stories that I will need to tomorrow, going to bed late at night(or early in the morning). Somewhere between this I have to find time for my own amazing family and everyone else in my life.

My only attachment (though it is much bigger now) to Rett Syndrome, is that people I care about are affected by it. I don’t care about the politics, I don’t care about excuses, none of that means anything to me. It’s stupid. 

Which is why, when I have to take the time out of my day to write this kind of blog, to be dragged away from much more important things like RETT SYNDROME AWARENESS it makes me angry. If you think you can do a better job, sit down and do it, just do it. Get out there, make the noise, don’t hide behind a keyboard bullying, spreading nonsense and belittling people that are doing it.

If I am driving you to do a job a better job, then that is fantastic, mission accomplished. If you are doing the same to me, even better, whether we are pushing each other through competition, or support, NONE of it is bad for our cause. Our cause is the only thing that “everyone” in this community shares, and driving us to be the best we can be will make us ALL better for it.

If you are offering nothing positive, then rather don’t offer anything. If you are fighting each other, instead of fighting for Rett Syndrome, then you need to rethink your priorities.

If you do want to be involved, then we want to arm you. We want to arm you with cards, leaflets and graphics, we want to arm you with whatever you need to smash the walls down. If that excites you, speak to us. If it does’t, speak to us about what does and we will make it.

If you don’t like what I’ve got to say, if you want to fight, and you’re going to comment…I want you to stop right there.

Take that minute you’re going to use to reply to me, go somewhere on the web and use it to tell someone about Rett Syndrome.

Rett Syndrome Awareness Month

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