Hopefully everyone is adapting and keeping well in these difficult and unprecedented times. Not surprisingly a number of MTF events have been postponed, but not cancelled!
You can keep up to date on our planned activities on our events page, but hopefully you will have seen by now the Maisie Tothill Foundation Ball has been rescheduled for the 17th October, due to the Cliffs cancelling the event. Other fund raising events will also take place later in the year.
The Maisie Tothill Foundation continued to be active up until the lockdown working on our objectives which are raising funds for charities helping people impacted by epilepsy, also raising awareness and #makingadifference .
At the end of February the MTF arranged for SUDEP Action to run a training session for the group of GPs who look after Student population of Leeds on how to manage the risks around epilepsy and particularly the risk of SUDEP. They used Maisie’s (and that of another student who suffered a similar fate whilst at Leeds University) as examples to make the training poignant.
Samantha Ashby from SUDEP Action fed back from the event:
"I shared Maisie’s story (& the reason why I was there) with them at the start, along with looking at Emily’s story and those of a couple of others who had died while at university later in the session. While they found it challenging to hear the stories of those who had died, particularly in Leeds itself, there was some interesting discussion in the room about discussing epilepsy risks, which I hope will help encourage them to keep tackling the issue with their students."
Earlier in March we were given with opportunity to talk to 120 sixth formers at Bedford School. We would like to thank Michael Catt, a sixth former at the school, for thinking of us. They also made SUDEP action a nominated beneficiary of their charity week . We liaised with SUDEP action for some appropriate material to use at school and top and tailed it with our Maisie’s story.
We had a heartwarming letter back from the school:
“Thanks you for coming in and speaking to the boys today. Your talk was excellent - informative and very moving and it will be a talk that they will remember. Thank you for being so open about Maisie and for explaining your reasons for spreading the word. Your work is a wonderful tribute to your daughter. I will keep you posted about the fund raising next week. All the best with your future charity endeavours and with you awareness raising”
This particular demographic are highly likely to be effected by epilepsy personally. The following Monday we received a letter from the school saying that one of the boys who was at the talk was with someone that weekend who had a seizure and he said he felt better equipped to deal with the situation.
Finally James was on Emma Barnett's show on Radio 5 live in February to talk about returning to work after a bereavement. He managed to get an unashamed plug in for the good work SUDEP Action in the process.
So although we may have been quieter than usual on all of our Social Media platforms, you can see that work goes on to make sure that something positive comes out of the loss of our beautiful Maisie.