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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
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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
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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
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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:
Reverse Rett website: https://www.reverserett.org.uk
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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!
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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!
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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
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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.
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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
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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
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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 medical research organisation, the Association of Medical Research Charities where she oversees the collection, analysis and publication of sector data to demonstrate the scale of charity investment in medical research and highlight the impact of this research on people and society.
In this conversation, Jocelyn shares the impact of her first meeting with a young patient with Rett Syndrome and provides some insight into what she learned from studies conducted with these children and families. We also discuss the work of AMRC and why membership is so important to small medical research charities like Reverse Rett, particularly now during the on-going pandemic.
I am grateful to Jocelyn for taking the time to speak to me and especially for indulging my unscientific contemplation of what goes on inside the minds of people with Rett Syndrome. As always, we’d love to know what you think of the podcast. Please don’t forget to like and subscribe.
https://www.reverserett.org.uk
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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 plane, heading for Great Ormond Street to do whatever they could to help their little girl.
If you’re in need of an emotional lift today, look no further. Paul's is a story of deep love, but also loss; of adventure and hope and infinite death defying dedication to his beloved daughter.
I am grateful to Paul for his generosity in sharing the story of his beautiful girl. We hope you get something out of it too. Please also leave us a review/comment and above all, please subscribe on whatever platform you listen to podcasts on. https://www.reverserett.org.uk
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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 fundraising footsteps, his challenges both past and present, his devastation at Ciara's diagnosis and touch on some of the mental health problems that parents go through, especially dads.
I really enjoyed talking to Neil so openly. It was, in a way, a kind of therapy. We've been friends for many years and done challenges together but being big, bald, Northern men we've never opened up fully. We are definitely both cut from the same cloth though I think he's slightly angrier than me.
Thank you to Neil for joining me this week and for being so candid throughout our conversation.
We would both love to know what you thought of our conversation so please leave a review on whatever platform you listen to podcasts on.
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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 talk about the relentless nature of Rett Syndrome; how the symptoms continue to rain. What it’s like learning and re-learning to live with new symptoms, adapting and moving on, but always on a knife-edge, waiting to see what else is around the corner.
This is a super emotional episode. I am grateful to Minati for her openness about what her family has experienced over the last ten years. Between us, we cover diagnosis, seizures, blended diet and arguing with God, as well as acknowledgement vs acceptance, prepping Tara for sharing the TV when the new baby comes and how the crying never stops (us not them).
As always, we’d love to know what you think of the podcast. Please rate us on whatever platform you listen on or leave us a comment and don’t forget to subscribe. Thanks for listening!
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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 Helen in so many ways for more than twenty years.
In this episode, Helen and I talk about the immediate aftermath of Shelley's death and the years that followed. We also both discuss our personal experience of symptoms of Post Traumatic Stress Disorder and how we learned to manage them.
For those who have listened to the first episode, this is another warm, heartfelt conversation with this courageous woman but disclaimer, some people may find this episode upsetting.
An additional disclaimer, neither Helen nor I are medical doctors or psychologists, we are sharing our personal experiences and things we have learned about ourselves.
Help for anyone feeling suicidal, depressed, anxious and those struggling with addiction issues including alcohol is available. So is help for people struggling with loss and bereavement. Resources linking you to relevant services can be found on the Reverse Rett website on the page for episode 13.
https://www.reverserett.org.uk/podcast/
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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 social inequality to being the one calling 999 and guiding the ambulance home, this is an enlightening episode for special needs parents everywhere.
Huge thanks to Peter, Riley, Angus, Naomi, Finlay for sharing their stories so openly. Big respect to them and all the Young Carers out there whose lives have been inextricably altered by this experience. We hear you and it matters.
Reverse Rett
#MakingChangeHappen for children and adults with #RettSyndrome
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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 well.
Through this enlightening conversation, Yvonne and I cover so much, about finding a diagnosis for Clare, starting a patient organisation in the days before the internet and some of the things Yvonne and her husband have put in place to ensure that Clare stays as well as possible.
We talk about parent power, respiratory issues, aspiration, chest infections and what it was actually like for Yvonne and Clare, going to Buckingham Palace and getting that MBE.
For me, as Co-founder of another Rett organisation, this conversation was all at once, funny, sad, heart-warming but above all, welded in responsibility; the responsibility each of us has to our daughters and the pain of other families’ experiences which is invariably carried with this all-encompassing, deeply personal work.
I am so grateful to Yvonne for taking the time to speak with me. I hope you enjoy the episode. Please let us know by rating the show on whatever platform you listen on or sharing/commenting via social media @reverserett
Thank you for listening!
Show notes including links on the Reverse Rett website here: https://www.reverserett.org.uk/families/episode-11-yvonne-milne/
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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 friend themselves.
So how is life different when you have a four-year-old with Rett Syndrome? How can you tell who they are without speech? How can you tell who they like? What they want? What’s the matter with them when they cry?
Through this honest conversation, Steph and I explore all this and more. We talk about the difficult days of searching for a diagnosis and finally finding Rett. We talk about what it’s like having to lift and carry a large child beyond the age that most of us stop lifting babies.
Most importantly, we talk about our shared hope for the future, treatment for our children. Whether that be drugs or therapies to improve their health or their abilities; we’ll both take anything that can give them a better life.
We hope you enjoy the episode! Your comments on the podcast enable us to continue to make more podcasts, so please do leave a comment, whatever platform you listen on. Please share on social media with a comment and tag us in @ReverseRett on Twitter, FB and Instagram.
Links
Brainwave
Rett UK/communication info
Potential funding avenues for eye gaze and other equipment
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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 Motherwell and us both doing the National 3 Peaks as our first challenge for Reverse Rett. Mark is also just 2 weeks younger than me.
During our conversation we talk about his career and his two epic challenges for 2021, the brutal Marathon des Sables (MDS) and a 100 mile run where he will visit 4 of the clubs he played for professionally which he has set a 30 hour time limit on.
Mark has inspired so much support from his former clubs, friends, fans and the media over the past 8 years and his latest adventures have already captured their imagination once again with over £4000 already having been donated.
I’m truly grateful to Mark for taking the time to talk to me so openly. His story of Dionne’s life is very similar to my own with my daughter, Beth and spending those couple of hours with him was a real rollercoaster of emotions.
Mark would welcome support on his 100 mile run so if you would like to run a few miles with this Scottish Cup winner on his journey from St Johnstone to Motherwell to St Mirren and finally Kilmarnock please contact Mark at [email protected]
We would both love to know what you thought of our conversation so please leave a review on whatever platform you listen to podcasts on.
Thank you
Support Mark’s challenges here
Find out more about the epic Marathon des Sables here
Read Mark's recent interview in the Daily Record
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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, uplifting, inspiring and even funny at times. Jo, her two daughters and granddaughter have pressed on through the last year of lockdown, shielding Keisha at home and even surviving Covid.
What is it that gives someone this kind of resilience? Perhaps it’s your child being diagnosed with Rett Syndrome at a time when there was no palpable hope in research.
Maybe it’s being told so many times that your daughter is probably not going to survive the year. Or realising that the only way she is going to make it, is because of you; your determination, your action, your questions, your refusal to give in. All of this, over and over again.
In this heartfelt conversation, Jo and I explore these issues as well as just how they’ve managed on a practical level throughout the last year of lockdown. We talk about the compounding complexity of being a mixed-race family as well loving and caring for a severely disabled person. We discuss how Jo and her girls worked so hard to protect Keisha emotionally as well physically, when her Dad died, and how he lives on through the love of music they shared.
We hope you enjoy this episode! As always, Jo and I would love to know your thoughts. Please leave us a review on any platform. Don’t forget to subscribe so that you are reminded when new episodes are published. Thank you!
Resources:
PALS Patient Liaison and Advice Service
Health Watch
Hot Zone Richard Preston
The Fresh Prince of Bel Air
Hospice services for children in the UK
Crohns and Colitis UK
Rett UK
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