Spinal Cord Tumour Forum

The Spinal Cord Tumour Forum

Benign Spinal Cord Tumour Support & Information


Christine's Story

Our thanks to Christine who has written her story for us.  You can now read it on the Your Stories page.  She was told she had a tumour in 2013 but she has opted so far not to have surgery to remove it.  In her story she explains her reasons for this and what has happened during the years since her diagnosis.

Open House Event in Leicester, Saturday, 3 November

My name is Carolyn Turner and I am the fundraising manager for the forum.

I have just completed Sober October and I am having my annual Open House on Saturday 3rd November.

The concept of the Open House originally started as an extended coffee morning. I would simply put on the invites from 10 am onwards and I found that family and friends were happy to while away the hours, way beyond noon.
So the following year I decided to include a light buffet, which was great as those who had missed the breakfast pastries and could catch lunch followed by more cakes.

Last year I decided to mix things up a bit and introduced some friends and colleagues who where crafty to set up stalls and sell there wares just in time for Christmas.

This year we have stall holders selling glass ware, jewellery, soft furnishings, ceramic and felting. They donate £10 each plus lunch money and anything they make on the day is there’s to take home. Last year a couple said they made more at my house than they made at previous craft fairs!

My local Asda have been great with their community champion offering to donate buffet items and Morrison’s donating cakes and biscuits.

I also wrote in the invitations inviting those who enjoyed baking to offer up their skills in the way of donations and have had a great response from my neighbours.

I have sent out at least 50 invites with plus ones and sent out numerous text messages so we’re hoping for a decent turnout.
A neighbour has recently set up a neighbourhood watch scheme and we have joined a WhatsApp group. He asked if I would be happy to invite the group along so we could all put faces to the names and I’ve had a good response from people I’ve never met who are happy to bake cakes and come and support the forum and the Brain and Spine Foundation, who I also fundraise for as a Community Ambassador.
I will let you know how it all goes in my next post.

If you would like to join us please send an email to Carole at carole@spinalcordtumour.org.uk

CERN Foundation Guide to Ependymomas

The CERN Foundation in the US has published the second edition of its guide to ependymomas.

It provides basic facts surrounding ependymomas, its diagnosis and treatment.

You can download the Ependymomas Guide here

It is also possible to ask the Cern Foundation for a free copy of the guide to be posted to you.

Please help us to raise awareness of the SCT Forum

Many people have never heard of spinal cord tumours, and many who are affected have little access to information or support. By increasing awareness of the Spinal Cord Tumour Forum, we can increase general awareness of this condition, and reach as many people as possible across the country who are affected and would benefit from the website.

Please consider helping us by taking the SCTF poster to your hospital or doctors surgery to ask them to put it up on the notice board for patients.

You can download and print out the SCTF poster here

If you have any issues downloading the poster, just send us an email and we can send it to you directly. 

If you do take the poster to your hospital or local surgery, please drop us a line to let us know, so we can keep track of where the forum is being publicised.

Thank you!