Stand YOUR ground

Over the past few months you’ve seen quite a lot of Cure Rett. You’ve seen Infographics, awareness cards, wristbands and pins. You’ve seen Flitty, T-shirts and birthday cards. You’ve seen our hearts. You’ve seen that we care. We care about the community, the families, the science and the research. We care about our fundraisers, supporters and networks. We care about the girls. The most frequent thing you tell us is that you can clearly see…we care about the girls.

What you might not have seen is that in the background – behind the scenes – we’ve been attacked repeatedly, for a variety of different reasons. Some justified, some not. 


We’ve always tried – with varying degrees of success – to address any issues as quickly as possible.  However, some of these questions can only be answered over time {we are in this for the long haul} as we test our methods and grow.

We’ve been very cautious. We’ve tried to avoid stepping on toes or offending people.  We made a team decision not to strike back when people disparage us – which, although the professional and polite thing to do, hasn’t always been the easiest. Of course we have things to say – who wouldn’t want to defend what they passionately believe in? –  but often we are shackled by our concern of giving offense or causing division in the community. Neither do we want to provide further ammunition to those who would criticize, or judge anything we said, regardless of intent.

From the beginning, it’s been our ambition to work with ALL other charities and to share whatever skills we have.  We made contact with every Rett related charity prior to launch conveying our sincere desire for co-operation. We’ve been tremendously successful with a host of charities, most notably IRSF and RettUK. Our relationship with IRSF and their team has been fantastic.  They’ve been excited, committed, helpful and just great on every level. On a daily basis someone from Cure Rett is interacting with someone from IRSF about any number of projects on which we collaborate {WATCH THIS SPACE}. 

If we’re not working with a charity,  that’s their decision….not ours. 

We’ve always had a plan. We’ve been meticulous in it’s execution. We have a Marketing Strategy, a Social Strategy, a Support Strategy and a number of other Strategies that will be revealed as time goes on. Most importantly we have commitment and faith in each other. We work as a team and make good use of  ALL our skills.

We’ve stuck to our principles and it’s really starting to pay off.

Today something changed.

We believe that ‘something’  has enabled us to speak. 

We have something to say – we’ll still be polite and professional saying it…. – but this time, we will speak.

We’re not going to back down anymore, or tow the line just to be amicable. We won’t be targets or bullied just because we’re ‘new’. 

We have some pretty cool ideas. Those marketing strategies came from experience – not thin air. Those ideas got some heavy slamming but are now being copied by the people who initially criticized them. Why? Because they work.

We have one VITAL commitment. That commitment is to YOU.  This isn’t about us, it’s about children & families affected by Rett Syndrome. This isn’t a vanity project.  YOU are the most important part of what we do. 

Is money needed to fix this? Of course it is, but there’s so much more to it than money.

What’s also needed is LOVE. Love and support. These are the tools we can ALL use to help each other right here and right now.  You are not a wallet. You are a person with needs, commitments and struggles of your own. You need to take care of the most important people in your life right now. You shouldn’t feel pressured to raise money by people who only appear in your life when you have something to give. You should be given to – not taken from.

Charities come and go, networks change. Your commitment is to your child not to us or anyone else out there. We promise you one thing at Cure Rett, we will support you regardless of what you do or who you are.  We will help you.  We will catch you.  We will be there for you. 

Why?  Because YOU make Cure Rett special. You are the army – dictating our moral compass. You drive our direction. YOU are the heart of US.

If today’s taught me anything, it’s this.  We’ve been right. We’ll keep doing what we do…for the best reason of all.

Because we CARE TO CURE.


Stand YOUR ground