The Reverse Rett Podcast

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 [email protected] 

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 [email protected]

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 [email protected]

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:

[email protected]

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 [email protected] or DM me on the Reverse Rett Instagram. Thank you for listening!

In today's podcast episode, I’m speaking to Helen Simmonds, Vice Chair of Reverse Rett and mother to Lauren who is 14 and her younger brother William.

I met Helen all the way back in 2011 when Lauren had just been diagnosed. Helen was die-hard Reverse Rett from the get go, willing to do anything she could to help make change happen for our children. 

From the beginning of her family’s journey through the many ups and downs this debilitating condition has led them through, Helen’s dedication to making things better for Lauren, both in the here and now and for the future, has never wavered. Helen is not naturally outspoken but she doesn’t shy away from doing things the hard way, if that’s what it takes to get Lauren what she needs, whether that be communication technology, appropriate adaptations, schooling, surgeries or the clinical care to keep her well. 

Throughout this conversation and in the time I’ve known Helen, I’ve found her to be strong and clear-headed, determined and persistent with much hard wrought insight and experience to share with Rett families old and new. 

In this conversation, we talk about managing the last year with Covid, Scoliosis surgery (don’t let that put you off) ‘being that mother’ vs becoming a true advocate for your child, when to say ‘no’ or ‘get someone else please,’ the difficulties of coping with two very young children and a new diagnosis at the same time and much more.

As always, we’d love to know what you think and if you found the episode helpful. Please email [email protected] or message us on any of the socials @reverserett

This week our guest is one of the busiest dads on the planet, my friend, David Wainwright.

David lives in Loughborough with wife, Louise and their three children. His eldest, Georgia has Rett Syndrome and his other daughter, Phoebe has a rare brain condition called Pachygyria & LIS1, coincidently they are both under Professor Santosh at the CIPP Rett Centre and CIPPRD. Their son, Liam also keeps them on their toes. I see his Facebook posts and wonder how they remain so positive and happy in the face of the issues they deal with on a daily basis, they really are an inspiration to me.

It was a pleasure to talk to David about his family, his relentless fundraising for Rett Syndrome, his journey into sports journalism and the people he's met who have also become huge supporters of Reverse Rett.

David is a larger than life character with a big heart and inspires support wherever he goes. I've had the privilege of doing the half marathon at the Great Manchester Run when we pushed our girls 13.1 miles on the hottest May day since records began. I saw first hand how determined the big fella and his running mate, Trevor Jones are that day and also what a lovely, smiley girl Georgia is.

Huge thanks to David for taking the time to talk to me, as always, it was emotional. We would love to know your thoughts on our conversation and the Reverse Rett podcast so leave a review on whatever platform you listen on. Or @reverserett on any of the socials. 

This week’s podcast guest is Vincent Johnsson, Dad of Hannah and three boys, he’s also on about day 470 something of a 500 day (yes, 500 days...) 5K a day challenge which started even before the pandemic (can anyone even remember those days?) and has gone on all throughout!

At first glance, Vincent is not at all the usual pain-hungry, self-punishing type male we typically witness undergoing these trials of physical and spiritual endurance under the guise of fundraising at Reverse Rett, but he is no less passionate, determined, angry, committed, hopeful and stoical about this never-ending daily get up and do it all again grind which is living with Rett Syndrome, oh and the 500 day running thing as well.

Throughout this episode, I laughed and cried and walked away, more determined than ever, to keep on going until the next lamppost. Have a listen and let us know what you think [email protected] or @reverserett on any of the socials

If you want to support Vincent find out how here: https://www.justgiving.com/fundraising/vincents5adaychallenge

Today my guest on the Reverse Rett Podcast is Sara Meredith, mum of five, writer, storyteller, blogger, and all round hard-loving human.

Sara’s third daughter Livvy, was diagnosed with Rett Syndrome after a familiar ongoing struggle to convince professionals that something  was wrong.  Sara spent the next several years, doing everything she could to give Livvy and her other three daughters, as equal a life as possible, with a positivity which shines through ‘Living Like Livvy,’ Livvy’s story, which was published in 2018 by Andre Govier with all proceeds to benefit Reverse Rett.

Throughout this conversation, Sara and I laugh and cry; there are moments so saturated with emotion that neither of us can speak.

We talk about what it was like for Sara, as a writer, to have someone else write her most important story. We talk about Livvy’s devastating sudden death and the gentleman pathologist who helped the family find answers. And we talk about the family’s decision to later foster and ultimately adopt Daniel, a gorgeous six year old boy who also has complex disabilities.

This episode may be raw, and stricken with grief but it’s wholeheartedly drenched in love and joy and yes, the permission to feel.

To buy Sara's book "Living Like Livvy, Livvy's story" from Amazon/Kindle - https://tinyurl.com/wsjmbj6c