The Reverse Rett Podcast Rachael Stevenson

In this episode Mark “Mavis” Reilly. Mark is a former professional footballer; he shares his story and experiences taking on some of the most gruelling physical challenges to raise awareness for Rett Syndrome and his latest challenge next year will be his most challenging so far.
Mark’s book, “The Lives of Reilly,” delves deeper into his inspiring journey.  All profits from the book will be donated to the charity Reverse Rett.
Buy Mark’s book here: https://namelesstownbooks.com/product/the-lives-of-reilly/
The best way to support the podcast is by subscribing so that you get updates as soon as a new episode comes out. Thank you for listening, it also helps us get this Podcast out to a wider audience.
https://www.reverserett.org.uk
 

The whole Rett Syndrome community were enthralled as the Five in a Row team set off from the Canary Islands last December in the Talisker Whisky Challenge.
 
Rowing the Atlantic is on the bucket list for most adventurers and five guys from Scotland did just that and supported Reverse Rett too. What a test of physical and mental endurance it is!
 
The boys were rowing in honour of Eliza who has Rett Syndrome. Her dad, Ross McKinney was part of the team and it was a real privilege to talk to Ross and the boat's skipper, Duncan Hughes about their epic adventure on the high seas.
 
I hope you enjoy listening to Ross and Duncan as much as I did. Having done plenty of challenges over the years I was fascinated to hear the inside story of these two North Berwick legends. I didn't dwell too much on the infamous 'Jobby Bucket' you'll be pleased to know.
Please listen, share and if you have any comments, questions or ideas for new future podcast guests, please email me rachael@reverserett.org.uk 
The best way to support the podcast is by subscribing so that you get updates as soon as a new episode comes out. Thank you for listening, it also helps us get this Podcast out to a wider audience.
https://www.reverserett.org.uk

It's been a while but the Reverse Rett podcast is back!
It was a pleasure to speak to the Pink Elephant man himself earlier this week as he approaches his latest crazy challenge for Reverse Rett.
Sponsor Gareth at JUST GIVING here: https://tinyurl.com/223mbbtb
When Gareth Warne lost his sister Reverse Rett didn't exist. In fact, back in 2005 there didn't seem to be any Rett Syndrome research on the horizon. Two years later the reversal experiments happened and the future for people with Rett Syndrome looked suddenly brighter.
Sadly, this new hope came too late for Angharad who passed away suddenly aged 17.
Gareth discovered Reverse Rett in 2013 and has been doing challenges ever since. Each one has been more brutal than the one before but Gareth keeps taking them on inspired by the memory of his younger sister, Angharad.
Gareth talks about Angharad, what drives him on to keep on pushing himself through the pain barrier and the reason behind the Pink Elephant.
Please listen, share and if you have any comments, questions or ideas for new future podcast guests, please email me rachael@reverserett.org.uk
The best way to support the podcast is by subscribing so that you get updates as soon as a new episode comes out. Thank you for listening!
Reverse Rett website: https://www.reverserett.org.uk

The Reverse Rett podcast is back and in this episode, I’m speaking with Mathilde Mastroianni, Assistant Psychologist at the CIPP Rett Centre, South London and Maudsley NHS Foundation Trust and King’s College London.
Anyone whose child or adult with Rett has been a patient at CIPP Rett, CIPPRD or on a clinical trial at King’s over the last four years will know Tilly. During her time with the CIPP Rett team, she’s been clinical trials co-ordinator, clinical research assistant and assistant psychologist.
To families, that means Tilly has been the person they reached out to with questions, problems, reassurance and support with all manner of issues related to the clinical care and management of their family member with Rett.
In this conversation, Tilly and I talk about what got her interested in psychology in the first place and how she moved from that initial spark to the highly specialised work of the CIPP Rett Centre.
We discuss the effects of the pandemic on the work of the Centre over the last two years and the team’s extraordinary and swift pivot to telemedicine, and explore what’s behind this team’s fairly unique holistic, empowering and yet supportive approach to the clinical management of children and adults with Rett Syndrome and other rare diseases.
Please listen, share and if you have any comments, questions or ideas for new future podcast guests, please email me rachael@reverserett.org.uk
The best way to support the podcast is by subscribing so that you get updates as soon as a new episode comes out. Thank you for listening!
If you are interested in registering someone with Rett Syndrome for monitoring by the CIPP Rett Centre, please email:
cpmrs@slam.nhs.uk
Reverse Rett website: https://www.reverserett.org.uk

If you were offered a chance to cure your child's disease, would you take it?
Not a question we have to think very hard about at Reverse Rett, but this is the fundamental question that underpins Victoria Scott’s new novel, 'Patience' which is published today August 5th 2021 by Head of Zeus.
I was grateful to have the opportunity to interview Victoria on this episode of the podcast to talk all about Patience; why she wrote this story, how she wrote it and about the characters we get to know throughout. We also talked about Victoria's very personal experience of having a sister with Rett Syndrome herself, and everything that experience contributed to this extraordinary novel.
Prior to publication, 'Patience' has already been very widely acclaimed. At Reverse Rett, we are keen to support this work which we hope will infuse a better understanding of Rett Syndrome, disability, love and family in and amongst the wider population.
Thank you so much to Victoria for taking the time to speak with me on the podcast. As always, please let us know what you think by leaving a review and hitting subscribe.
You can order Patience from Waterstones, on Amazon including Kindle - or at your local bookshop. Thanks for listening!

In this episode of the podcast, I sit down with Cam Ross, older brother to Frankie, and son of Reverse Rett co-founder and Trustee, Rita Ross.
We'd never had a conversation before recording this episode but had supported each other's work from afar, both in fundraising and through Reverse Rett Instagram.
In this conversation, we talk about maintaining a strong relationship with our sisters, the pain of watching their condition get worse, and how our friendships and relationships, in general, have been affected by having sisters with Rett.
We also chat about fundraising, social media and what keeps us going through hard times.
I really enjoyed our talk, and I hope you will too. As always, please let us know what you think. You can email me peter@reverserett.org.uk or DM me on the Reverse Rett Instagram. Thank you for listening!