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25/10/2019

Reverse Rett Weekly Blog

We produce a weekly blog to share what we’ve been up to, information from the rare disease community and pieces from families living with Rett Syndrome.

We want to bring the UK Rett community stories of our activities, things we’ve found interesting, and updates from research as well as the real life thoughts and experiences of families living with Rett Syndrome.

We’ll be posting the blog every Friday. If you’d like to share your own story on our blog, please contact rachael@reverserett.org.uk

This week there has been some discussion on social media about families of children and adults with Rett Syndrome and related disorders fundraising for Rett Syndrome patient groups and about other potential ways for charities to bring in the funds they need to do the work they are doing.

In this week’s blog, we’ll be addressing some of the questions raised from our perspective at Reverse Rett. Further questions and comments are welcome. Please also feel free to email me on the email address above if there is anything you want to ask about or discuss in terms of the charity’s fundraising activities.

Why do families affected by Rett Syndrome fundraise for Rett charities? Can’t someone else do it?

Reverse Rett is a research focused charity. We work to accelerate treatments and a cure for Rett Syndrome and related MECP2 disorders. Since the organization was launched in 2010, by parents, affected families have been the backbone of the organization with their personal connections and experience garnering support from their families, friends and wider communities.

In the nine years since Reverse Rett started, there has been one event out of hundreds which was held by a company which had no personal connection to Rett Syndrome. There are a few fine people who have done challenges or supported the organisation in kind, who have no personal connection. We can count them on two hands.

This is not because efforts to engage individuals, companies and organisations outside the Rett community have not been made. This is because no one cares about accelerating treatments and a cure for Rett Syndrome as much as affected families do.

In short, if no Rett families had ever been involved in Rett charities, there would be no Rett charities.

Reverse Rett was founded by myself, Andy Stevenson, Kori Dryhurst Coates, Rita Ross and Monica Coenraads.

RSRT by Monica Coenraads and Ingrid Harding.

The 401 Project by Collene Wright and Peter Anderson.

Rett UK by Yvonne Milne.

Girl Power to Cure by Ingrid Harding.

RettSyndrome.org by Kathy Hunter.

We are all parents and the continued work of all these charities is closely reliant on the support and involvement of those who are most likely to benefit from the success of these organisations.

Do you ask newly diagnosed families to fundraise?

When we connect with newly diagnosed families, we do not ask them to fundraise. We help them with whatever issues they are having if we are able and answer any questions they have raised.

Most often, newly diagnosed families we are in contact with get in touch with us because they have read about research and or the work of Reverse Rett and they have questions. Sometimes, we reach out to families who we see are struggling to obtain a diagnosis, or who are having particular difficulties. We help them with their issues and often refer them to Rett UK as well for professional family support.

Some of these families become aware of the fundraising efforts of other affected families and are often inspired to take a challenge or start an event as a way of positively responding to the diagnosis.

Different people have different ways of coping. Some people are compelled to do something positive to contribute to research so that they do not feel impotent in the face of this diagnosis. Other people throw themselves into making life immediately better for their child and family. All of these responses to the diagnosis can be positive and we encourage families always to do what they think is best for their child.

Why can’t you get money from corporates, trusts and foundations?

At Reverse Rett, we work hard to bring in money from Trusts and Foundations. For the last eighteen months, we have had an experienced Trusts and Foundations fundraiser working two days a week for Reverse Rett to try to improve income in this area.

What we have found is that grants from trusts and foundations which come to Reverse Rett are usually successful when they come from personal connections in the same way that community fundraising comes from personal connections.

Corporate support is the same; it typically comes from someone at the company who cares about Rett Syndrome making the ask.

We do make cold approaches to trusts and foundations as well as companies and 98% of the time this is not successful.

Why don’t you sell merchandise to raise money?

In our experience at Reverse Rett, selling merchandise is not an efficient way of raising funds and it is also time and labour-intensive.

Why do animal charities raise so much more than you do?

As strange as it seems to many people who have a family member affected by a condition like Rett Syndrome, one large UK animal charity will bring in more money annually than all the smaller rare disease organisations put together. This is not an issue which is specific to Rett. In 2016, the RSPCA raised £143.5 million and the Cats Protection League raised £69.2 million.

I suspect this is because most people know about the existence of cats and other animals but not everyone knows about Rett Syndrome. Even if people do learn about Rett Syndrome, unless you know someone with Rett, it is just another horrible condition on a long list of horrible conditions. Whereas cats are soft and fluffy creatures which many people can relate to.

Why can’t you help families fundraise for the things their own children need or better still, provide them?

This is not the remit of Reverse Rett. The remit of Reverse Rett as a UK registered charity is to relieve sickness and to preserve health for the public benefit by developing treatments and cures for Rett Syndrome and related MECP2 disorders.

Doing something in the public benefit means it cannot benefit people on an individual basis.

This is why people who do fundraise for their children’s individual needs cannot set up a registered UK charity to do so, because the work they are doing is not in the public benefit.

Public benefit is the reason that charities are able to claim Gift Aid on donations and why businesses will sometimes contribute prizes for raffles etc.

However, as parents of children with Rett ourselves, we are painfully aware that children and adults with Rett Syndrome have a lot of needs and that many pieces of equipment, therapies and adaptations are not covered by the NHS or social services or indeed by health insurance or Medicaid in the USA.

We acknowledge that there are families in the UK and elsewhere who do raise funds for equipment and therapies etc for their individual children.

At Reverse Rett we do not ask families not to do this or impart any opinion on the matter. What we do ask is that families do not use the Reverse Rett charity number to fundraise for their child’s personal benefit as this is not legal and it is the charity’s fiscal responsibility to ensure that it does not happen.

In the UK, there are a number of charities whose specific remit it is to help families obtain special equipment such as Cauldwell Children’s Charity, The Sequal Trust and Variety the Children’s Charity.

Turn 2 Us is another great resource which allows you to search for grants you may be eligible for based on your location, age, health needs and other demographic information.

Does Rett Syndrome research receive government funding in the UK? If not, why not?

In the year we launched Reverse Rett, (2010) I personally queried the Medical Research Council (MRC) (UK government research funding body) re specific funding for Rett Syndrome research in the previous five years. There had not been any funds designated to Rett Syndrome. Rett had been categorized under autism which meant that it appeared that Rett research was receiving some funding but when this was explored further, Rett Syndrome in particular had not received any funding.

In general, organisations such as the Medical Research Council and the Wellcome Trust tend not to focus on specific diseases because it benefits a greater proportion of the population to provide funding for basic science which might further research in a number of areas, rather than focusing on rare diseases, research into which might only benefit a limited number of people.

Often, grants which come from government bodies will require that the body must be cited on publications which come out of the lab in the grant period even if the funding is not specifically related to the work.

For example, research into DNA methylation which might be funded by the Wellcome Trust or Medical Research Council may have a broader focus than Rett Syndrome and progress in this area could relate to other issues/diseases, but as there is also a link to Rett they would be cited as contributors under the conditions of the grant.

On the links below, you can research past and current Rett Syndrome research funding at both MRC and the Wellcome Trust:

Medical Research Council

The Wellcome Trust

As a patient group, is it right to encourage affected families to contribute to the cause? Surely they are the group you should be helping?

At Reverse Rett, we believe in the power of families to affect change.

Our children and adults with Rett are beautiful and dignified. They are loved and cared for. We are living with the effects of a devastating medical diagnosis, yes, but we are not victims and neither are they. As families, we have a choice about how to respond to the situation we find ourselves in.

Of course, it can be hard enough to get through the day living with Rett Syndrome without adding any other responsibilities to the load. Not everybody can fundraise for charity and not everybody wants to.

Some families fundraise for research because they want to affect change for their own child with Rett and some fundraise even though they are convinced that their child will never benefit from the research. Some people with children with Rett fundraise for other causes besides Rett charities.

Most families who fundraise for research find it empowering to do something to impact change for people with Rett Syndrome in the longer term.

We launched Reverse Rett because we wanted to give research-focused UK families like our own, a way to impact Rett Syndrome research in whatever way they were able. Over the years, people have helped in many ways and it isn’t always about raising money.

As treatments for Rett Syndrome continue to emerge, there will be more ways in which we call upon families to help, such as campaigning to drive emerging treatments through the regulatory bodies.

The stories, experience and knowledge of people with Rett and those who love them are the strongest advantage we have in this, and in all of our endeavours, to improve the lives of people living with the condition both in the short and longer term.

If you think there is something you might be able to help with or contribute to the work of Reverse Rett in any way, even if it is just an idea, we encourage you to get in touch.

rachael@reverserett.org.uk

Comments and questions welcome. Thanks for reading.

Rachael Stevenson

Co-Founder, Executive Director

Reverse Rett

Photo credit: Mary Lishomwa and Team Abigail in Australia taking part in the fourth annual Reverse Rett Global Run as part of Rett Syndrome Awareness Month