Season 1
Season 1 of Rarely Heard is where it all began – a powerful exploration of the challenges faced by rare disease patients, parents, and carers.
In this first season, listeners hear directly from those living with rare conditions, sharing their stories, struggles, and strengths in their own words. Through honest conversations, Season 1 shines a light on the emotional realities of life with a rare condition.
Please note that during these episodes Beacon was known as Findacure before our rebrand in 2022!
You can listen to Season 1 of Rarely Heard now on your favourite podcast platforms, including Spotify, Apple Podcasts, and Amazon.
Meet the Season 1 hosts!
Phillippa Norman
Rarely Heard host
Phillipa joined the Beacon team as Projects Coordinator in November 2019 and left in May 2023. Her favourite thing about hosting the Rarely Heard podcast was being able to talk to so many people from acoss the rare community and having the priviledge of hearing about their unique stories and experiences.
Phillipa created an open dialouge about the challenges that so many in the rare community face.
Ilmarie Braun
Rarely Heard host
At the time of recording, Ilmarie was the Campaign Assistant and Volunteer Coordinator at Same but Different.
She has been involved with Same but Different on a more personal level since 2016 when her son Eddie took part in the project ‘Rare Aware’. When the project launched it gave Ilmarie both the courage, and platform, to start talking about the rare journey on which she and her family had found themselves.
Ilmarie wanted to hep create increased awareness of, and an honest conversation around some of the mental health challenges a rare diagnosis can bring.
Season 1 Episodes
Season 1, Episode 1: Duchenne Muscular Dystrophy: Motherhood, acceptance and finding happiness
Shelley Simmonds’s life was forever changed by the birth of her second child, Fraser, who was diagnosed with a rare, genetic, disabling and progressive life-limiting condition called Duchenne muscular dystrophy in February 2014.
Season 1, Episode 2: Hunter Syndrome: Motherhood, grief and loss
Geraldine Renton’s world changed forever in 2020, when her son Ethan passed away due to Hunter Syndrome.
As chronicled in her award-winning blog, ‘It’s Me & Ethan’, and her debut novel, ‘Ethan & Me’, Geraldine and her family managed the rare disease for eighteen years, with a lot of love, laughter, and communication.
She talks candidly about her life with and without Ethan in it, how writing has helped her and finding courage and a path forward in the midst of grief.
Season 1, Episode 3: Spina Bifda: Fatherhood, mental health, and the importance of inclusion
Dan’s rare journey began with the birth of his daughter, Emily who has multiple rare diagnoses.
Dan is an incredibly proud dad, and brilliant role model for his daughter and she has gone on to win her own awards. As well as caring for Emily, Dan is a disability & mental health campaigner.
Season 1, Episode 4: Lyme Disease: Stigma, indentity and finding joy
Being diagnosed with Lyme Disease at age 14 meant Morven-May went from being a teenager with boundless energy to spending all her time in bed. She speaks about how this changed her identity, friendships and the path her life was due to take.
Morven-May advocates for better awareness, understanding and prevention of Lyme disease and as well as writing her book she also authors blogs and has appeared on TV and radio to advocate for better awareness.
Season 1, Episode 5: PCDH19 Epilepsy: Motherhood and the journey towards finding hope and healing.
Hannah’s son Alfie was the first person to receive an NHS prescription for medical cannabis.
He lives with an incredibly rare form of epilepsy, PCDH19, which saw him turn from a seemingly healthy baby to living his life in and out of hospitals in just a few months; suffering life threatening clusters of seizures.
PCDH19 Epilepsy is characterized by treatment-resistant epilepsy that begins in the first year of life with early onset seizures.
Season 1, Episode 6: Life as a young carer: identity, perceptions and looking after yourself
Connor talks about what it’s like to be a young carer for his partner Simon who lives with multiple rare and chronic diseases including hypermobile Ehlers-Danlos Syndrome and Idiopathic intracranial hypertension.
He talks openly about what it’s like to be both a partner and a carer and how this has impacted his identity and self perception. To Connor, caring is a positive thing and he believes that the perception of caring and disability can be changed with increased awareness and education of what it means to be chronically ill.
Season 1, Episode 7: West Syndrome: Fatherhood, advocacy and men’s mental health
Matt’s rare journey began when his young son Charlie was diagnosed with a rare and catastrophic form of epilepsy known as Infantile spasms (West Syndrome). Charlie’s complex needs and disabilities have changed life for Matt and his family. Matt talks honestly about his mental health, and the realities of adapting to a life that is so different from the one you imagined.
After 18 months, and with Charlie now suffering over a hundred seizures per day Matt and his wife Ali were told that the NHS could do nothing more to control his seizures. It was at this point that Matt became an active campaigner and advocate for Charlie, adding his voice to the campaign for NHS access to medical cannabis.
Season 1, Episode 8: Huntington’s Disease: Family, uncertainty and living life to the full
Ashley wears many hats in the Huntington’s disease (HD) community as a carer for her dad, employee at Huntington’s Disease Association Northern Ireland and a blogger who writes about her experiences. Ashley is yet to fully know all the ways in which HD may manifest itself in her life as there remains a 50% chance that she may develop the disease herself in the future.
She talks openly about her feelings towards being a carer and potential carrier of HD, the misunderstanding that accompanies the question of genetic testing and the way her perception of and feelings towards HD and life have changed over time.
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Our Season 1 supporters
Season one of The Rarely Heard podcast is developed by Beacon for Rare Diseases and Same but Different. All content is created independently, and sponsors and supporters have no influence over editorial content.