Singing for a Cure

by Colin Gordon

A post on Facebook caught my attention recently. It suggested that approximately 4% of families affected by Rett Syndrome are actively involved in fundraising for a cure. Now, whilst I am somewhat sceptical of this, it did get me thinking about the challenges involved in fundraising over an extended period.

For my own part, I started off like most people, doing long distance runs to raise some money. This was a good experience in many ways and I discovered many new things about myself through the process. However, it always was apparent to me that this is not something that I would have been naturally inclined to do, had I not had a niece with Rett Syndrome (I am uncle to Romi Loffler).

This got me thinking a bit, given the huge potential I can see in raising money to find a cure for Rett Syndrome. I was aware that if I was to devote a significant of amount of my time to fundraising, it would need to be something I enjoyed doing and hopefully, would be of benefit to myself and others also. Eventually, I began to think up ideas which combined my long standing passion for music and a desire to connect with other people to raise cash and awareness.

My first attempt at this consisted of a songwriting project, which I did in collaboration with my friend and musician / producer Scott Basham. We wrote and recorded one song a month, written about the month, in real time. We started in Janaury 2016 and by December we had an album of 12 songs. If you look up the album “Prestonpancakes” by the Rett Rockers on Spotify etc you can still hear it. The idea was to use the money from download streams to raise money for Reverse Rett. However, this failed spectacularly, as the money raised was tiny.

Our next idea was to take the songs from the project and perform them at a special concert at the Caves in Edinburgh in 2017. We got a special rate from the Caves and we asked Trav3ller to headline for us to boost sales. We had a couple of other acts who performed and gave their time for free. The event was quite successful and we raised over £2k. We also made some CDs to sell of the recordings which raised £50.

We did the concert again the following year and it was slightly less successful financially, although we were brilliantly entertained by the headliners Cow Cow Boogie, Rocka Hillbillies and the Electrical Melting Machine. However, it was apparent to me that many of the people there had struggled to make it, travelling quite far in honour of the cause. I also felt heavily indebted to everyone I had ask to participate and so decided not to repeat the idea the following year.

About this time, I acquired a new mobile phone which had a pretty decent camera on it. It occurred to me that I could use this to do a weekly song request show through Facebook live to raise money for Reverse Rett. I set up an associated justgiving page where people can request a song for me to play by donating £5. You can find it at I now do the show Song Request Tuesday each week live at 9pm through the Reverse Rett Facebook page.

We’ve been going since May 2018 and done about 60 shows so far. Initially, they were very amateurish but we have tried to improve the format each week. I also try to get different musical guests on each week to make it more interesting as well as bringing Reverse Rett to new audiences.

The process of refinement is ongoing. We now have a regular sponsor through St Peter’s Without who provide weekly refreshments of non alcoholic beer for the show. I am always on the lookout for other corporate sponsorship, so any companies reading this, please get in touch!

To summarise my experience of fundraising for Reverse Rett I think if you want to do something for a long period of time, make it something you enjoy doing and do it a little and often. Good luck in all your endeavours!

To make a song request for Song Request Tuesday, simple donate £5 to Colin’s JustGiving page and leave a message including your song request.