Fields of Flowers

We have had a lot of feedback in the last couple of days about our new campaign #StoptheCreep.

At Reverse Rett, we believe dialogue is good and we welcome all questions and comments from families and supporters.

This campaign has been in development in partnership with sponsors Core Marketing for more than six months.

Core Marketing are advertising, branding and design experts who develop and implement campaigns, like this one, for companies, businesses and non profits across the UK and beyond. 

Our goal for the campaign was for Rett Syndrome to reach people within the general population, those who are not personally affected by Rett Syndrome and who probably have never heard of the disorder.

It was clear from the outset that in this super information age where all of us are consistently scanning information and images, that the campaign would need to strike people instantly, in order for it to be noticed, for it to spark interest and for it to leave a memorable mark in the minds of people who have never heard of Rett Syndrome before.

This is critical for a number of reasons:

  1. Identifying undiagnosed patients. At Reverse Rett, we are working to deliver treatments and a cure for the condition. In order to ensure that UK patients with Rett can access treatments and a cure as they emerge, these patients need to be accurately identified as having Rett Syndrome. There will be people out in the UK today whose child or adult family member has Rett and they are not aware of it. As things currently stand, those patients will not have access to emerging treatments that could improve their health and the quality of their life significantly
  2. Registering diagnosed patients. In the Rett community it often feels like all of us know everyone who is out there because of groups on social media. Data from a variety of sources tells us that there are many more UK patients out there who do have a diagnosis but who are not registered on the UK Rett Syndrome Patient Registry nor in contact with either Rett UK or Reverse Rett, particularly those from minority backgrounds or families who speak English as a second language.  We need to ensure that as treatments and better clinical provision becomes available, that we can inform all families so that their child or adult with Rett Syndrome can benefit from improvements in treatments and medical care as soon as possible.
  3. Engaging the general public in fundraising. At Reverse Rett we have a number of financial commitments to ongoing and emerging research projects and it is vital that we are able to raise the funds needed in order to support these critical pieces of work. In the last several years, income at Reverse Rett has remained static, despite the immense efforts of all our supporters. At the same time, over the last year, we have heard from different pockets of the Rett community that some people believe that the onus should not be entirely on families to raise the funds needed to support Rett Syndrome research and other charitable activities to benefit this population. 

This is why we need a heart stopping campaign to pique the interest of the general public and to make Rett Syndrome memorable in the minds of those who are not affected and to whom, Rett Syndrome is just another debilitating condition on a long list of debilitating conditions.

Despite these goals and the knowledge that we would need something jarring to make the general public sit up and notice Rett, we were aware from the outset that this campaign and the other two sample campaigns which were developed may be difficult for families.

During the six month development process for the campaign, we reviewed all previous Reverse Rett marketing campaigns and those of other Rett organisations around the globe. We looked at what has worked and what hasn’t worked. We also reviewed other hard hitting public campaigns from a variety of charities and organisations.

We ran focus groups with UK Rett families of children and adults of all ages and of varying abilities as well as focus groups with the general public and professionals personally unaffected by Rett but who know the charity well. In total over 70 people participated in the focus groups.

The response to the campaign from the focus groups was similarly Marmite to the responses we have seen since we launched the campaign yesterday. Many responses were long and detailed. All responses were thoroughly reviewed, discussed and much of the feedback was taken on board and the campaign evolved based on all the responses given.

For many years at Reverse Rett, we have predominantly used images of children and adults with Rett Syndrome in fields with flowers, in parks and gardens. Often without wheelchairs or other necessary equipment. Some children have been held up as if sitting, by a hidden adult behind them. Most have been coaxed or sang into smiling for the camera. 

Unfortunately, we know empirically that these are not images that will capture the attention of the general public. Nor do they capture the essence of a generally progressive condition with over 50 identified symptoms. For that, we needed an image which demonstrates a very much loved child being pulled from loving parents or a child being somehow constrained. 

Different families will naturally have different views of this analogy of Rett Syndrome. It is difficult for any of us who love an individual with Rett Syndrome to hold negativity about the condition at the same time as accepting it, living with it, working around it and caring deeply for the person affected.

This campaign is not for our families. In the interests of those patients who are not yet identified, we need other people to know about Rett Syndrome, people who have never heard of it before. 

We need other people to look it up and remember the symptoms so that they can spot someone who may have been living for many years without the right diagnosis; people who can encourage friends and families they know to register the person they love.

We need other people to get involved in the effort to accelerate treatments for Rett Syndrome; we need other people to fundraise. Other people besides all of us who walk this fine balance every day or trying to manage all the tremendous day to day needs of our children as well as hoping for better health and quality of life for them at the same time.

#StoptheCreep can help us achieve these goals.

As a parent, even in my professional role as Reverse Rett CEO, I still don’t like to see the diagnostic criteria for Rett on a piece of paper. I don’t like explaining what it is to random people who ask, because that laundry list of symptoms and the trajectory of the condition doesn’t speak to who my daughter is.  

It just says what the condition can do. That’s what we want people to know, in an instant. On their way home, on a crowded tube. Reading the paper in the morning. Passing a billboard on the motorway. 

Whispering won’t work. We need to shout. Rett Syndrome needs your attention. Fields of flowers just won’t do it.

by Rachael Stevenson

Co-Founder, Executive Director, Reverse Rett