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

Ep 26 Ross McKinney and Duncan Hughes

Jul 25th, 2022 40m 34s

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 Scot

Ep 25 Gareth Warne - Pink Elephant Challenge 3

Jun 22nd, 2022 32m 7s

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://tiny

Ep 24 - Mathilde Mastroianni

Oct 1st, 2021 49m 58s

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

Ep 23 Victoria Scott

Aug 5th, 2021 51m 28s

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 p

Ep 22 Cameron Ross

Jul 24th, 2021 40m 24s

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

Ep 21 Helen Simmonds

Jul 16th, 2021 52m 10s

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

Ep 20 David Wainwright

Jul 2nd, 2021 48m 27s

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 b

Ep 19 Vincent Johnsson

Jun 18th, 2021 50m 46s

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?) a

Ep 18 Sara Meredith

May 14th, 2021 52m 16s

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

Ep 17 Jocelyn LeBlanc

Apr 30th, 2021 37m 58s

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

Ep 16 Paul Field

Apr 16th, 2021 45m 15s

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 7

Ep 15 Neil Fowler with Andy Stevenson

Apr 9th, 2021 59m 21s

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 min

Ep 14 Minati Das

Apr 2nd, 2021 55m 56s

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 so

Ep 13 Helen Crompton revisited

Mar 26th, 2021 31m 26s

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

Ep 12 Young Carers Take Over with Peter Dine

Mar 19th, 2021 56m 41s

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

Ep 11 - Yvonne Milne MBE

Mar 12th, 2021 56m 37s

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,

Ep 10 - Steph Wood

Mar 5th, 2021 57m 50s

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; whe

Ep 09 Mark Reilly

Feb 26th, 2021 1h 3m

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.

Ep 08 Joanna Tomlin

Feb 18th, 2021 53m 37s

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

Ep 07 Katie Samson

Jan 18th, 2021 1h 1m

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 w

Ep 06 Ross McKinney

Jan 7th, 2021 53m 3s

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

Ep 05 Helen Crompton

Dec 16th, 2020 56m 7s

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

Ep 04 Rita Ross

Dec 4th, 2020 59m 17s

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 banki

Ep 03 Dr Ruksana Ahmed

Nov 25th, 2020 1h 18m

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