Change the World

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When Carys was diagnosed with Rett Syndrome, something profound happened in my life. At first I didn’t quite understand what James was telling me, that this perfect little child had something wrong with her. I had no idea what Rett Syndrome was, even after James explained it to me, I had no idea the gravity of the diagnosis. I went onto the internet to read about Rett Syndrome, and the more I read, the bigger the lump in my throat got, I grew more and more hollow. At that stage, I could only try to imagine the devastation that Bonny and James were feeling, and I had a dilemma of my own, I had no idea how to deal with this. All I could do was offer my support and friendship, to try to be a best friend to James and Bonny and guardian to Carys, anything I could do to help cushion the devastation of a new diagnosis. When James said he was going to be raising money for a cure, my response was that “we” would be raising money for a cure, no matter what the cost, I was determined he would have someone to lean on when he needed.

Carys has made me far more introspective, she has affected me in ways that no child ever has. I have many nieces, nephews and God children, I love them all, but they have the advantage of being able to talk to me, which means I find it relatively easy to communicate with them, especially when they get to an age where we can. I’ve never been good with infants, always been a little (a lot) terrified of them to be honest, fragile things and I don’t mix well with fragile. I’m clumsy, big and most times pretty scary to tiny things. With Carys, I have been forced to find a way to deal with this and it’s been really tough, I had to learn patience and understanding. I’ve had to learn to give in a very different way but it’s all paid off, because now when I see Carys, she smiles at me. While I’ve always found it easy to talk to people, now I’ve had to start listening, not just listening for a voice, but listening for the things she wants to say, but can’t; for Carys, a smile and a cuddle means so much. Carys also teaches us, she teaches how important little things are and how the most minute seconds can’t be taken for granted. She teaches us empathy, bravery, strength, patience and she teaches us about selflessness. You cannot afford to ponder things, you just have to do them and get on with it, face up to what is required because it has to be done. That resilience in decision making is found across all the Parents of Children with Rett Syndrome that I have met, and it’s no different with James and Bonny.

James and I have what I can only describe as an honest friendship, there is nothing that gets hidden, no matter how brutal. It’s because James is the most honest person I know, he is truthful to the point of sometimes being tactless. He doesn’t lie, he doesn’t skirt issues, he tackles everything in his life in exactly the same way, head on. He is incredibly determined, sometimes hard-headed and stubborn, but he does listen, he listens and then asks the questions other people are often scared to ask. You only need to know James to know that he is undaunted, whatever he sets his mind to he completes. Whatever the challenge, whatever is needed, he pushes on till it’s done, he always completes things. In most cases without the training that was required, blistered, broken and bleeding, but he will finish.

I’ve tried to do every challenge I could with him (some I haven’t finished), and done some more on my own, through the last two years my cause has grown from only being about my friends and Carys, to a whole lot of new friends and children with Rett Syndrome that I have met. My cause has extended to include people who are affected by Rett Syndrome, which doesn’t only affect the child, but everyone in it’s life. This cause has taught me empathy, humility, and the power of the human spirit to rally and support those who need it. It’s taught me about the generosity of human kind, and for all the bad parts, it’s showed me so much of the good.

I have learned to hate the word “imagine” used to describe Rett Syndrome, it’s almost impossible for someone who isn’t directly affected by something of this magnitude to “imagine” it. I am close to the subject, very close, every day I speak with moms, dads, brothers, sisters and friends who deal with the affects of Rett Syndrome in their lives, and everyday I’m astounded by their strength. I have realised that those times, when I was supposed to be “imagining” things, I was nowhere even close to what that means. I learn a new pain every day, I read something in a blog, or in a group, or just something said to me in a chat, that makes it difficult for me to respond, that makes me want to cry. I’ve also learned that these children, affected by these horrible afflictions, are beautiful in a way that is so difficult to comprehend, so fragile, but so strong, so pure and so brave, there is so much more to them then people realise, the perfect paradox.

I have learned it’s not just about a cure, it’s about care, caring for our children and caring for each other. I’ve learned that if we want things to change, we can’t sit around waiting for it to happen, I am not trapped  in my body, unable to speak, unable to walk, unable to control my movements, anxious, alone, frustrated, a prisoner of my own biology. We are in control of ourselves, and we can no longer sit around waiting for the world to change. I think the reasons I chose this song are obvious, because I hope we have started with the answer.”

 

Change the World

Cure Rett, we’ve got something for you…

We’ve focussed heavily on building a team with a professional attitude, but still keeping the personal touch. We want to provide you with the “stuff” you need to get the best possible results from your efforts.

Your support has been amazing, but none of this is possible without YOUR enthusiasm and energy. We love being inspired by people, we think the best ideas are sitting out there among you and we love finding ways to express those ideas.

You are important to us and to our collective cause. Whatever you’re doing, whether you’re liking our pages and posts, sharing our story, pasting pictures in facebook, baking cakes, colouring your hair, painting your nails, arranging coffee mornings, climbing, walking, strolling, running, or getting tattood, whatever it is we love it. We love you for doing it.

We don’t expect you to become shaven headed disciples but we do hope you’ll engage with us. We promise to be professional and courteous. Yes we care and yes we’re human but that doesn’t excuse us from offering you the service our cause demands, in a timely, professional manner.

We all hold down full time jobs here which is why we try set proper expectations for delivery. We are always open to discussion, to listen to your ideas and to give you realistic deadlines. 

Think about what you need, tell us what that is, and we will endeavour to get it.

 

Cure Rett, we’ve got something for you…

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

Cure Rett

It’s been a while since I posted here, with the business blog moving to WordPress I haven’t really had the time. That with other projects that have been consuming my afterhours time.

Mostly I’ve been expending all my energy on our charity work, and using my skills to help us build a brand which will hopefully enable the community to work together. The hard work is done now, and now we just have to see how it all works out.

This is the logo, I’m really proud of it, I think we got it spot on.

Logo-white

I should be in a position to start posting again soon. With a break in all the challenges and a little more time on my hands. I think my first story will be about the evolution of this logo.

Cure Rett