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 dona...

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 Ret...

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 th...

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 R...

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 abou...

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 pa...

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 thro...

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 t...

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...

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 equ...

Today's podcast conversation is with Dr Jocelyn LeBlanc. Jocelyn earned her PhD in neuroscience from Harvard Medical School where she worked in the laboratory of Dr. Michela Fagiolini.  Jocelyn then made the unusual shift from working with Rett mice to working with children with Rett Syndrome at Boston Children's Hospital. Now resident in the UK with her own family, Jocelyn works for the umbrella...

What can I say about this week's podcast conversation? Paul is a Londoner-Kiwi, Master of Philosophy and History, a runner, a former Disability Access worker and most significantly, father to Eowyn and Jake. Paul and Eowyn's mother met in the 70's and had Eowyn when they were both just 20 years old. When they couldn't find an answer to what was happening to their baby in New Zealand, they got on a...

This week I'm talking to a true Rett Warrior, Neil Fowler. Neil's daughter, Ciara was diagnosed with Rett Syndrome and he discovered Reverse Rett in 2012 when he saw the 'Cure for Dylan' ride on Sky Sports and he's been pushing his body and mind to the limit ever since. We discuss his amazing family, his wife Gayle and his other two children, Michael and Sofia who have both followed in his fundrai...

In this episode, I am speaking to the courageous and articulate Minati Das, mother of Tara age almost 10. I 'met' the devastated Minati seven years ago when Tara was first diagnosed with Rett Syndrome. I find Minati today, seasoned in Rett, a solid straight speaker and advocate and currently expecting a new baby after so many years of looking after Tara as an only child. In this moving episode, we...

Regular listeners to the podcast may well remember Episode 5, when I spoke to Dr Helen Crompton, mother of Shelley who had Rett Syndrome and died suddenly at the age of 11, all the way back in 1983. In today's podcast episode, we're revisiting the conversation I had with Helen and sharing some of our deeper and more intimate discussion about Shelley's death and the resounding effect it had on Hele...

This week, on the Reverse Rett Podcast, 18-year-old A Level student, Peter Dine who is brother to not one, but two young women with Rett Syndrome, speaks to fellow Rett siblings from Washington State to the East Coast of Scotland in celebration of Young Carer's Action Day 2021. From the moment they first realised their sibling was different, to the additional anxieties of Covid; from the rage of s...

My podcast conversation today is with Yvonne Milne, MBE, mother to Clare and Founder of the Rett Syndrome Association UK, now known as Rett UK. Clare, now 39, was the first person to be diagnosed with Rett Syndrome in the UK and since that day, Yvonne has made it her mission not only to give Clare a healthy a life as possible, but to support other parents and families living with Rett Syndrome all...

This week's podcast is with Steph Wood who lives with her husband and young daughter Emilia, in Dornoch in the very far North of Scotland. Emilia is the magic age of four. That beautiful age when a child's true personality begins to emerge; when they start setting out into the world somewhat independently of their parents, developing preferences for particular other little people and become a tiny...

This week we have a change of presenter, me, Andy Stevenson. It was a real pleasure to spend some time talking to former Professional Footballer, Ironman and dad to Dionne, Mark Reilly. Mark and I have known each other for a good few years now. We have a lot in common with him and my dad being born in Bellshill, Scotland, they both played professional football with their first club being Motherwel...

For Joanna Tomlin, life with 34-year-old Keisha, who has Rett Syndrome has been tough enough for the last few years, without a global pandemic. In recent years, the family lost Keisha's much beloved Dad, Mark, to cancer as well as dealing with another complex gastrointestinal disease for Keisha, on top of Rett Syndrome. Despite all this, my conversation with Joanna was startlingly stoical, uplifti...

Anyone with a child with Rett Syndrome remembers the pain of hearing those words for the first time. That moment is seared on our hearts forever; fear for the life we've been plunged into, fear for the future that lies ahead, and fear of what will happen to them after we are gone. But what if that first time you heard the words 'your child has Rett Syndrome' was not the last? What if your child wi...

Later this year, come what may, Civil Engineer and Dad of four, Ross McKinney and fellow teammates, Ian, Duncan, Fraser and Clive will be setting off to complete the Talisker Whiskey Atlantic Challenge for Reverse Rett. I don't know much about rowing but with everything that's happening in the world right now, I reckon escaping to row the Atlantic might not sound like such a bad thing to many peop...

For most parents, our worst nightmare is that our child stops breathing. In Rett Syndrome, breathing problems are commonplace, but what would you do if your child needed to be resuscitated? Worse still, what if they weren't able to be saved? In this episode, I'm speaking to the brave and brilliant, Dr Helen Crompton, whose daughter Shelley, died in 1994 at the age of 11. It was a privilege to spea...

This week's podcast guest is fellow Reverse Rett Co-Founder and Trustee, Rita Ross. Rita and I met over a decade ago, when a small group of parents formed the charity back in 2009. Apart from the fact that Rita had a successful career in banking as well as a young daughter, Frankie who has Rett, I didn't really know anything about her. Even after all these years of shared interest in our common go...

On this week's podcast, I'm speaking to Dr Ruksana Ahmed, Consultant Clinical Psychologist at New Centre for Personalised Medicine in Rett Syndrome, based under the National and Specialist Child and Adolescent Mental Health Services, CIPPRD, at the Maudsley Hospital in South London. During our conversation, Ruksana and I touch on those all too familiar feelings; shame, guilt and loss, as well as t...