When things go wrong, don’t go with them

By Rachael Stevenson, Co-Founder & Executive Director, Reverse Rett


Once again this week, UK charities are in the news for all the wrong reasons.

Aid charities who many of us have trusted and supported all our lives, such as Oxfam and Save the Children have been under scrutiny both for the misconduct of their staff and for the charities’ responses, or lack of response to the misconduct.

At this time, as both co-founder of Reverse Rett and the organisation’s Executive Director, I want to remind our supporters of the values of this organisation and of what’s important to us. We can’t do what we do without your support. It’s critical that it continues and for that to happen, you need to have trust in the charity and what we are doing.

Reverse Rett was founded by parents of children (several of whom are now young women) with Rett Syndrome.

All UK charities in order to be given charitable status have to have an objective that is ‘for the the public benefit.’ In other words, they have to be committed to doing something that generally helps everybody.

For Reverse Rett, this objective is: to relieve sickness and preserve health for the public benefit by developing treatments and cures for Rett Syndrome and related MECP2 Disorders.

People often laugh when I quote this objective aloud on a regular basis. I know it well; I wrote it myself when we founded the charity back in 2009-2010 and the objective remains the same today.

Everything we do at Reverse Rett is tied to this objective. We fundraise so that we can fund research focused on treatments and cures. We support UK clinical trials and the development of improved clinical care so that UK patients with Rett can access treatments and a cure as and when they become available. And we provide information, so that the condition can be better understood and managed and so that people with Rett Syndrome can survive until treatments and a cure are readily accessible.

Although we don’t work directly with children and vulnerable people at Reverse Rett, all of our staff undergo DBS checks. We have a firm Child Protection Policy in place and a named Child Protection Officer, Events & Campaigns Co-ordinator, Beth Johnsson. All staff and Trustees have direct communication with our Chairman, John Sharpe and we encourage supporters and members of the public to contact Beth or John at any time with any concerns.

Our finances are managed by our self-employed book-keeper, Hayley-Rose Rutherford. As the organization has raised in excess of £500,000 per year since 2012, we have to undergo a financial audit by an external auditor every year. In the last two years, we have changed auditor to a local Manchester company called Slade & Cooper Plc., precisely because they are experts in charity accounting and because they are local to the charity’s main office. This means that they can complete our audit whilst physically in the office, sending Hayley and I back and forth for any piece of evidence they require whilst completing all their charity checks and balances. Our focus financially is always on running the organization as economically as possible so that we can send the maximum funds possible to research.

One of the things that has been highlighted by the Charities Commission as a concern for all charities is transparency; ensuring that charities are self-regulating in an open and visible way. That when things go wrong, we don’t go with them, instead, reporting issues and working through processes to ensure that things do not and cannot go wrong in the same way again. At Reverse Rett, our auditors have asked us to implement an organisational risk registry, so that we can highlight issues that might jeopardise the Charity’s operations and integrity and find ways to mitigate those risks in a methodical way.

Reverse Rett is still a small organization. We have four full-time staff members and we are not overly bureaucratic. But we value the integrity of the organisation’s mission and vision and your trust above all else; we can’t do anything without it. Because of that, because of our charitable status, we are accountable to you.

Most importantly, we are accountable to children and adults with Rett Syndrome; those who live with the condition today, those we have lost because of it, and all the children yet to be born or diagnosed with this devastating disease.

This is something we never forget and work to uphold daily.

Thank you so much for your continued trust and support.