Ulysses Neuro Podcast: Recent Episodes
Ulysses
Ulysses Neuro Podcast
We give voice, we do science!
Ulysses Neuro podcast is about giving voice to members of the public, families and patients facing difficulties with mental health and rare disorders. The team at Ulysses Neuroscience Ltd. will explain the underlying biology and current research, for each specific topic discussed.
This podcast aims to advocate, empower and give a voice to the community. Find out more on https://ulysses-neuro.ie/
Hope #Love #Cure #TogetherWeCan
In this new episode of the Ulysses Neuro Podcast we spoke with Audrey, Maria and Matty, to give us an insight into what it is like as a parent living with children affected by PANS and PANDAS.
PANS, standing for Pediatric Acute-Onset Neuropsychiatric Syndrome is an umbrella term that covers a group of disorders, one of which is PANDAS, standing for Paediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections.
PANS and PANDAS are complex system wide conditions that are characterised by the sudden, ‘overnight’ onset of neuropsychiatric symptoms in children, which may include obsessive-compulsive disorder, tics, anxiety, food restriction, aggression and cognitive changes including decline in academic ability. Physical symptoms like sleep disturbances and urinary problems may also be present.
PANS and PANDAS are little known and poorly treated, and there is currently no cure and a lack of research on the disorders and the associated symptoms. The diagnostic process is complex, and very often the disease is overlooked by the medical community resulting in a very long and complicated journey for the families affected.
Thank you to Audrey, Maria and Matty for sharing their experience with us.
Below are some resources for further information and support on PANS/PANDAS, along with those that have been mentioned throughout the podcast.
- PANS PANDAS UK Foundation: https://www.panspandasuk.or
- Facebook support group (Ireland) : https://www.facebook.com/PandasIreland/
- Neuroimmune Foundation: https://neuroimmune.org/ - resources for medical professionals.
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British Paediatric Neurology Association released a 2021 consensus statement on childhood neuropsychiatric presentations with the aim of helping members provide care based on the most accurate and up to date evidence for children with acute neuropsychiatric presentations, including where Paediatric Acute Neuro-Psychiatric Syndrome (PANS) and Paediatric Acute Neuro-Psychiatric Syndrome associated with Streptococcal Infection (PANDAS) are considered. The statement was updated in 2023 to highlight that all children presenting with acute onset neuropsychiatric symptoms should receive a full medical evaluation. It signposts clinicians to existing international peer-reviewed treatment guidelines. https://bpna.org.uk/?page=pans-pandas
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Aspire: https://aspire.care/ - resources tailored to the audience (booklets for schools, booklet for docs).
- Peer reviewed article: https://www.dovepress.com/pediatric-acute-onset-neuropsychiatric-syndrome-current-perspectives-peer-reviewed-fulltext-article-NDT?fbclid=IwAR3JdMLGe6O_Gjpi6-OveHzOfRErH4He-EBMfQvt1WPcxjt5tNXxibMkw7g
- Caregiver burden index: https://aspire.care/what-is-pans/caregiver-experience/
- My kid is not crazy documentary: https://www.youtube.com/watch?v=WJQT9-cQwIw
In this episode, hosts Ciara and Clare speak with Crystal McLoughlin to discuss life with her 3 year old son Tomás, who has Angelman Syndrome.
Angelman Syndrome is a rare genetic disorder affecting approximately one in every fifteen thousand births. Angelman Syndrome is caused by one of several different types of disruptions to a single gene, UBE3A, situated on chromosome 15, in the region 11-13 of the ‘q’ arm – referred to as 15q11-13. The majority of Angelman Syndrome cases result from a deletion of a segment of the maternal chromosome 15 that contains UBE3A. However, Angelman syndrome can also arise from a mutation in the UBE3A gene, or uniparental disomy, which is when two paternal copies of the gene are inherited from two paternal copies of chromosome 15. The core symptoms of Angelman syndrome include a unique happy demeanour, with frequent laughing and smiling, seizures, and severe developmental delays, for example having little to no speech. Other symptoms include balance and movement problems, abnormal sleep patterns, and feeding problems, particularly during infancy due to difficulties with coordinating sucking and swallowing.
For more information on Angelman Syndrome and the supports available, please visit the following websites:
http://www.angelman.ie/
https://angelmanireland.com/
https://www.angelmanuk.org/
https://www.angelman.org/
https://www.rareireland.ie/
https://www.angelmanclinicaltrials.com/
https://cureangelman.org/
https://cureangelman.org.uk/
Black History Month is an annual observance to remember and recognise important people and events in the history of the African diaspora. It’s celebrated in February in the US and Canada, while in Ireland and the UK, it is celebrated in October. As the father of Black History, Carter Woodson, said, “If a race has no history, it has no worthwhile tradition, it becomes a negligible factor in the thought of the world, and it stands in danger of being exterminated”. We encourage everyone to take the time this month to actively participate by learning about the history and culture of Black people globally, and listening to their experiences. These actions should not just be limited to one month of the year, but should be common practice all year round, helping to promote equality among people of all races.
In this episode we speak to two members of the Black African/Black Irish community, Dr. Immanuel Darkwa and Ms Gladys Otono Atsenokhai.
Dr. Immanuel Darkwa is an experienced start-up founder, lecturer, and researcher at Trinity College Dublin. His research interests lie in innovation models, entrepreneurship, innovation management, and innovation ecosystems.
Gladys Otono Atsenokhai, best known as MC Shakara, is an award-winning events host, comedian and mental health advocate. She also holds a Graduate certificate in Autism Studies and in 2022, won the Sheroes Global Founders Award for using her Platform “Navigating Autism” to help families of autistic individuals and their caregivers understand and navigate autism using simple strategies and her experience.
CDKL5 Deficiency Disorder (CDD) is a rare neurodevelopmental disorder caused by mutations in the CDKL5 gene, resulting in seizures, intellectual disability, motor and social impairments. As members of rare disease communities know all too well, CDD is an international disorder, with the patient population scattered all over the world. In light of this, we have produced a series of CDKL5 podcasts, each in a different language, to highlight the voices of the international CDD community.
सीडीकेएल-5 कमी अव्यवस्था एक दुर्लभ न्यूरोडेवलपमेंटल अव्यवस्था है जो सीडीकेएल-5 जीन में उत्परिवर्तन के कारण होता है, जिसके परिणामस्वरूप दौरे, बौद्धिक अक्षमता, मोटर और सामाजिक दुर्बलता होती है। जैसा कि दुर्लभ रोग समुदायों के सदस्य अच्छी तरह से जानते हैं, सीडीडी एक अंतरराष्ट्रीय विकार है, जिसके रोगी दुनिया भर में फैले हुए हैं। इसके प्रकाश में, हमने अंतरराष्ट्रीय सीडीडी समुदाय की आवाज को उजागर करने के लिए सीडीकेएल5 पॉडकास्ट की एक श्रृंखला तैयार की है, प्रत्येक एक अलग भाषा में ।
In this special Hindi episode, our host Disha speaks with Jainu Jogani who is the chairperson of CDKL-5 Alliance and father of Reyna who has CDKL-5 deficiency disorder.
इस विशेष हिंदी एपिसोड में, हमारी मेजबान दिशा ने जैनु जोगानी से बात की, जो सीडीकेएल-5 संधि के अध्यक्ष हैं और रेयना के पिता हैं, जिन्हें सीडीकेएल-5 कमी की अव्यवस्था है।
CDKL5 Deficiency Disorder (CDD) is a rare neurodevelopmental disorder caused by mutations in the CDKL5 gene, resulting in seizures, intellectual disability, motor and social impairments. As members of rare disease communities know all too well, CDD is an international disorder, with the patient population scattered all over the world. In light of this, we have produced a series of CDKL5 podcasts, each in a different language, to highlight the voices of the international CDD community.
Il disturbo da deficienza di CDKL5 (CDD) è una malattia neurologica genetica rara causata da mutazioni nel gene CDKL5 che provoca convulsioni, disabilità intellettive, disabilità motorie e difficoltà sociali. Come i membri delle comunità di malattie rare sanno fin troppo bene, con popolazioni di pazienti sparse in tutto il mondo le comunità attraversano i confini; anche la CDD, quindi, è una malattia internazionale, con pazienti a volte molto lontani fisicamente, ma uniti dalle esperienze legate alla loro condizione. Alla luce di ciò, abbiamo prodotto una serie di podcast CDKL5, ciascuno in una lingua diversa, per amplificare le voci della comunità CDD internazionale.
In this second episode, in Italian, our CEO Massimiliano Bianchi, ourclinical lead Carolina De Pasquale, and our Research Intern and PhD Candidate Fabiana Traini, all accompanied by Barbara Palladini, the general manager of CDKL5 Italia Onlus, ask two families from Italy about their experiences living with Cdkl5 deficiency disorder. It is a fantastic opportunity to hear diverse experiences of living with the same disorder, as they live in different areas in the country.
If you don't speak Italian, take the opportunity to listen to the rest of our podcasts, where we always hear from patients and caregivers to understand their lived experiences, and amplify their voices.
In questo secondo episodio, in italiano, il nostro CEO Massimiliano Bianchi, la clinical lead Carolina De Pasquale e la nostra ricercatrice e dottoranda Fabiana Traini, affiancati da Barbara Palladini, manager dell'associazione CDKL5 Italia, si fanno raccontare da due famiglie italiane come il disturbo da deficienza di Cdkl5 plasma le loro vite. È una fantastica opportunità per ascoltare esperienze di vita che pur avendo a che fare con lo stesso disturbo sono diverse, poiché vivono in diverse aree del paese.
Se non parli italiano, cogli l'occasione per ascoltare il resto dei nostri podcast, dove ascoltiamo sempre i pazienti e gli operatori sanitari per comprendere le loro esperienze vissute e amplificare le loro voci.
CDKL5 Deficiency Disorder (CDD) is a rare neurodevelopmental disorder caused by mutations in the CDKL5 gene, resulting in seizures, intellectual disability, motor and social impairments. As members of rare disease communities know all too well, CDD is an international disorder, with the patient population scattered all over the world. In light of this, we have produced a series of CDKL5 podcasts, each in a different language, to highlight the voices of the international CDD community.
El trastorno por deficiencia de CDKL5 (CDD) es un trastorno del neurodesarrollo poco frecuente causado por mutaciones en el gen CDKL5, que provoca convulsiones, discapacidad intelectual y deficiencias motoras y sociales. Como bien saben los miembros de las comunidades de enfermedades raras, CDD es un trastorno internacional, con una población de pacientes dispersa alrededor del mundo. A la luz de esto, hemos producido una serie de podcasts , cada uno en un idioma diferente, para resaltar las voces de la comunidad CDKL5 internacional.
En este episodio especial en español, nuestras anfitrionas Johana y Fabiana reciben a Sandra Lopez de España y Lisbet Vargas de Colombia, cuyas hijas Urgell y Ruth Sofia padecen el trastorno por deficiencia de CDKL5. Ellas comparten sus historias personales como parientes de niños que viven con una enfermedad rara, los diferentes desafíos que enfrentan en sus países, así como sus roles como defensores de esta condición en países de habla hispana.
In this special Spanish episode, our hosts Johana and Fabiana are joined by Sandra Lopez from Spain and Lisbet Vargas from Colombia, whose daughters Urgell and Ruth Sofia have CDKL5 deficiency disorder. They share their personal stories as parents of children living with a rare disease, the different challenges they face in their countries, as well as their roles as advocates for this condition in Spanish-speaking countries.
The Ulysses Neuro Podcast returns to mark Niemann-Pick Disease Awareness Month and Global Niemann-Pick Disease Awareness Day on October 19.
Our hosts Mary and Carol are joined by Samantha Berns, who has Niemann-Pick Type C (NPC), a subtype of Niemann-Pick Disease, and her mother Chris Berns. NPC is an ultra rare, progressive genetic disease that affects about 1 per million people. It causes lipids to accumulate in the brain, as well as some visceral organs, causing damage. NPC is highly variable in terms of symptomatology and age of onset: it can range from a fatal disorder within the first few months of life to a late onset, chronic, progressive disorder that might not be diagnosed until adulthood. In general, symptoms include a variety of neurological manifestations - with hypotonia and developmental delay being most common in younger children and apparent early-onset dementia or psychiatric manifestations in adulthood. Samantha and Chris share their story of living with NPC, as both a patient and parent. They talk us through the diagnosis process, the daily experience, and their roles as advocates.
For more information on NPC, supports, and Niemann-Pick Disease Awareness events, please visit the following websites:
https://nnpdf.org/resources/niemann-pick-awareness-month/#:~:text=October%20is%20Niemann%2DPick%20Awareness%20Month!&text=Support%20One%20Another%20and%20Support,Pick%20Disease%20in%20your%20community. (US)
https://nnpdf.org/resources/upcoming-events/ (US)
http://www.parseghian.org/ (US)
https://www.npuk.org/ (UK)
https://www.inpda.org/ (global)
Rare Disease Day is observed on the last day of February each year to raise the public's awareness of rare diseases. There are over 6,000 rare diseases worldwide, and approximately 4% of the global population is affected by a rare disorder. This implies that rare diseases are indeed individually rare, but collectively common.
This month, we focus on the rare genetic disorder Prader-Willi Syndrome, which is caused by abnormalities on chromosome 15. Some of the core symptoms include an insatiable appetite, low muscle tone and behavioural and developmental problems.
In this episode, we speak with Emma and Rory Tierney, whose son, Henry, has Prader-Willi Syndrome. They share their personal story as parents of a child living with a rare disease. In the second half of the podcast, we hear from Gary Brennan, the National Development Manager for Prader-Willi Syndrome Association Ireland (PWSAI), as he shares his knowledge on the supports available for those with Prader-Willi Syndrome and informs us of exciting research in the field.
December is a month that can be difficult for people with mental health issues and a history of trauma, and it is the most dangerous time of the year for drug- and alcohol-related accidents. In this episode of Ulysses Neuro Podcast we talk about addiciton and substance abuse, to help raise awareness on this disorder and reduce the stigma surrounding it: our guest Brendan, who has been battling addiction for 20 years, talks about his struggles and experiences with support structures. Addiction is a chronic brain disorder that manifests itself as a dependency on substances or behaviour. We discuss the complex nature of addiction, the overlap with mental health issues, the treatments available in Ireland and the stigma surrounding it.
In this episode of the Ulysses Neuroscience Podcast, we discuss the challenges and the joys found in life with Parkinson’s Disease from a patient’s perspective.
We chat with Gary Boyle, who received a diagnosis of ‘Young Onset’ Parkinson’s Disease in 2009 at the age of 44. In the years that have passed since, Gary has become a champion for an ‘interdisciplinary’ approach to dealing with Parkinson’s, and all other neurological conditions. Having previously been a Board member of the Parkinson's Association of Ireland for two years, this year, Gary was elected as a Board member of the European Parkinson’s Disease Association and has made it his mission to drive patient advocacy forward, so that in all medical consultations the patient is always placed first and is listened to in a way that fosters two-way conversation.
Each September, people from around the world raise awareness for dementia and the 21st is World Alzheimer's Day. Alzheimer's disease is the most common cause of dementia and accounts for 60-80-% of cases, but there are over 400 other different types of dementia. A few other causes are vascular dementia, Parkinson's disease, and dementia with Lewy bodies. In this episode of the Ulysses Neuroscience podcast, we discuss living with Lewy body dementia (LBD), as it is underdiagnosed and often misdiagnosed in Ireland.
During this podcast, we hear from Kevin and Helena Quaid. Kevin is the vice-chairperson of Alzheimer Europe and was diagnosed with LBD in 2017. He was the first to write a book from the patient’s perspective, titled, ‘Lewy Body Dementia Survival and Me,’ and will soon be publishing his second book, ‘I AM KEVIN! not Lewy’. Helena Quaid is the chair of Dementia Carers Campaign Network and has taken on the role of carer since Kevin’s diagnosis. In this episode we cover a wide variety of topics such as life with LBD both as a patient and carer, stigma surrounding it, supports available, the DaTscan and importance of early diagnosis, Robin’s Wish documentary and Kevin’s two books.
In this episode of the Ulysses Neuroscience podcast, we focus on the lives of Travellers in Ireland. Travellers are an indigenous minority who have been part of Irish society for centuries. In this episode we discuss the challenges and inequalities members of the Traveller community face in Ireland, including education, unemployment, overcrowding and healthcare. We chat to Bernard Joyce, who is the director of the Irish Traveller Movement (ITM) about his experiences as a Traveller in Ireland and the work he does with ITM. ITM is an organisation that represents the views of Travellers at a local, national and international level and works to promote change for Travellers with the aim to achieve equality in Irish society.
In this episode of the Ulysses Neuro Podcast, we celebrate Fragile X Awareness Day, which falls on the 22nd July in the US and other countries. We hear from Holly Roos, Community Services Director for the FRAXA Research Foundation, and her youngest child A. Holly is a mother of two children diagnosed with Fragile X Syndrome (FXS) and she shares her experience both as a mother and a carrier, discussing the challenges she has had to face from the very first day, sharing personal life stories and what kind of medical and educational support she had and how important it is to celebrate every single inchstone and milestone. A is 18 and lives in Illinois with Holly. A has just finished high school and is preparing to go to college soon. Holly and A share their experience of living with FXS, discussing the journey they have been on with Parker over the past two decades, and the challenges they have faced and overcome.
FXS is a single gene disorder affecting 1 in 4,000 males and 1 in 8,000 females. It is the leading inherited cause of intellectual disability and it is caused by mutation of the FMR1 gene, which in turn reduces the production of the FMRP protein. FMRP is crucial for typical brain development as it controls expression of a number of other neurodevelopmental genes. Two main mutations have been identified: The full mutation giving rise to FXS, and a pre-mutation form in carriers whose children are of greater risk of having FXS. Carriers are also at risk themselves of a neurodegenerative disorder called Fragile X-associated Tremor/Ataxia Syndrome (FXTAS).
Currently, despite the considerable progress in research in FXS, there is no cure or approved medication to treat the underlying causes of FXS and related conditions. This is in addition to the challenges faced by individuals with FXS and their families when it comes to diagnosis, support, and education.
In honour of Pride month, during this episode of the Ulysses Neuro podcast we discuss: LGBTQIA+ issues, access to services and mental health. Despite legislation to protect the community, there are still many existing inequalities faced by those of the LGBTQIA+ community such as unequal access to healthcare and work. In the workplace, there can be barriers and bullying due to surrounding stigma. This prejudice can result in poorer mental health, as those of the community are 1.5 times more likely to develop depression.
We hear from Philippa Ryder and Gillian Fagan, who are two of the founders of Under The Rainbow, which is a social enterprise that advocates for diversity, inclusion and workplace wellbeing. Philippa shares her personal experience as a trans woman and the challenges faced when accessing healthcare in Ireland. Gillian is a pansexual, neurodiverse cis woman and shares her experiences and knowledge from her work as a psychotherapist. We discuss a wide variety of topics such as: research showing the overlap between neurodivergence and gender/sexual non-conforming, the power language holds in moulding the perception of being LGBTQIA+ and the promising future towards equal access and treatment for all people in Ireland, regardless of their identity.
This episode of the Ulysses Neuro podcast recognises May as Mental Health Awareness month. Mental illness encapsulates a broad range of conditions; the most prevalent being mood disorders such as depression and anxiety. Feelings of anxiety and sadness are human emotions that everyone experiences at different times in their life. However, when these feelings occur more frequently, without triggers and become consuming they may manifest as mood disorders. Mood disorders can affect any one irrespective of age, gender or background. The prevalence of mood disorders has increased dramatically during the COVID-19 pandemic as feelings of loneliness, anxiety, frustration are all amplified as we move from lockdown to lockdown.
We discuss all of this and more with Stephen McBride, the Director of Services for Aware, an Irish organisation who provide a range of services including group meetings offering support and information, a telephone and email support service for both individual living with these feelings and their loved ones. Stephen outlines the necessary adaptations following increased demand for their services during the pandemic and how open conversation and education can stop the stigma associated with mental illness. Details of all of service provided can be found on Aware.ie.
In this episode of the Ulysses Neuroscience podcast, we address Autism Spectrum Disorder (ASD). Every year, April is Autism Awareness and Acceptance Month. Autism is a complex, invisible neurodevelopmental condition that affects the way a person communicates, interacts and understands other people and the world in a variety of ways: no two people on the spectrum are affected in exactly the same way. Self-advocacy is key to developing policies and research that focuses on the needs of individuals affected by a condition. The autistic community has been working relentlessly to ensure that autistic people enjoy equal access, rights, and opportunities.
We chat with Ian Lynam, who is part of the autistic community and a representative of AsIAm, Ireland's National Autism Charity. We discuss what it's like to live with autism, the common misconceptions surrounding autism and therapies, and services available to autistic individuals, including charities such as AsIam.
In this episode of Ulysses Neuroscience podcast, we address acquired brain injury (ABI). This year, Brain Injury Awareness Day falls on the 16th March. Acquired brain injuries are injuries that happen during a person’s lifetime and can change a patient and their family’s lives suddenly and with no warning. Family members can sometimes be overlooked during the process of recovery, particularly in regard to mental health and where to access information and support networks as they adapt to life after a loved one suffers a brain injury and deal with feelings of anxiety, depression and isolation.
We hear from Meadhbh, whose father suffered a brain bleed in 2019 leaving him with lasting physical disabilities and cognitive symptoms, meaning her family has taken up a full time care position within their home. We discuss the main types of brain injury, causes, prevention and what services are available for those affected in Ireland with the hope of raising awareness and moving towards improved services to offer the best rehabilitation outcomes for survivors of brain injury and support for their families.
The 28th of February marks Rare Disease Day and we pay homage to this day by chatting with Sarah Attridge who has CMT which is a sensory and motor neuropathy. CMT is a rare disease, often described as the most common disease you’ve never heard of. In this podcast, we explore CMT, giving an overview of the disease and the different subtypes. We hear directly from Sarah about the struggles and challenges she experiences on a daily basis, what supports she receives, how Covid-19 has impacted her therapy, and her hopes for CMT research in the future.
In our first podcast, we welcome Barry Murphy, communication officer from Bodywhys - The Eating Disorder Association of Ireland. We examine/define the various presentations of eating disorders and address the existing social stigmas and common misconceptions, while also advising on the various kind of services provided by Bodywhys and the Irish health services for patients and families affected by eating disorders.
We also consider current research and how the Covid-19 pandemic has fuelled mental health issues particularly affecting people with a vulnerability towards developing eating disorders. We address all of this and more with the hope of raising awareness on disordered eating as an illness and help to better understand those affected by such disorders.