Living with Alström: Stories, Challenges and Hope is a podcast created by Abdullah Jawad, a media production master's student at Birmingham City University, who himself has Alström syndrome. Combining personal stories with professional expertise, this series invites patients, families, clinicians, researchers and support workers for discussions on what it is like living with one of the rarest genetic diseases. In these nine episodes, expect to hear open discussions on topics such as diagnosis, research, family support, daily life, community and future hopes. As part of a Master’s research project, this podcast is created to raise awareness on Alström syndrome, as well as give voice to the people with first-hand experience of the syndrome. Any opinions and experiences expressed by our guests are personal and meant to raise awareness and educate. Please note that this podcast does not constitute medical advice of any kind. Consult a doctor for any health concerns you might have. For further information on Alström Syndrome UK: https://www.alstrom.org.uk/https://www.alstrom.org.uk/ Music: Music by Scott Buckley licensed under CC BY 4.0 . www.scottbuckley.com.au
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Required Pod Score for this show. PitchCentric checks your profile against host openness, topical fit, and audience signals before you generate a pitch.
Contact path
Public web form
Booking probability
36%
Guest openness
Selective
80/100
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What is Living with Alström: Stories, Challenges and Hope?
Living with Alström: Stories, Challenges and Hope is a general podcast hosted by Unknown Host, with 0 episodes on record and a Required Pod Score of 80. PitchCentric scores this show on Booking Probability, Listen Score, and live audience signals refreshed every 24 hours.
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Unknown Host hosts Living with Alström: Stories, Challenges and Hope, a general show with 0 episodes published.
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Episode #6
Episode 6: Living with Alström, Melissa Crowland story
Aug 16, 202632 minS1
<p>How does it feel to live with Alström Syndrome? </p><p>In this episode, Melissa Crowland talks about her experience of living with Alström Syndrome and tells the story of how it has affected her life. </p><p>From the difficulties of daily life and dealing with a rare disease to emotional health, independence and planning for the future, Melissa shares a personal insight into living with Alström. </p><p>Melissa’s story shows how even though everyone might have the same condition, each individual's experience of Alström Syndrome is unique. </p><p>This episode forms part...
Episode 5: Living with Alström, Harris Hamid story
Aug 16, 202627 minS1
<p>In this episode, Haris Hamid shares with us his personal journey of living with Alström Syndrome and the experiences he has had along the way. </p><p>Using personal insights, Haris discusses how his daily life looks like when living with an ultra-rare disease. We talk about the obstacles Haris has been through in his life, how he copes with those and the importance of achieving confidence and independence at all times. </p><p>We also delve into the use of technology to support visually and hearing impaired individuals in a number of ways, ranging from communication, to gaini...
Episode 4: Leadership and Motherhood with Kerry Leeson-Beevers
Aug 16, 202637 minS1
<p>In this episode, Kerry Leeson-Beevers gives us insight into her view on Alström syndrome from two very interlinked angles; that of being the mother of a boy who has Alström syndrome and being the Chief Executive of Alström Syndrome UK. </p><p>Kerry looks back at the journey of having received an Alström syndrome diagnosis and talks about the experience that she has been through. She discusses the challenges, uncertainties and emotions that can come with being in a family of someone who has a rare disease. </p><p>I will talk about Kerry's involvement in Alstr...
<p>Living with a rare disease often affects more than physical well-being and this is certainly the case for people living with Alström syndrome. The support that they get can play a critical role in dealing with the various aspects of diagnosis, living with the condition, and managing the different issues they face during their lives. </p><p>In this episode, we talk to Sarah Oliver and Clair from Alström Syndrome UK, both of whom have been involved in providing support for families and individuals living with Alström syndrome in the UK. </p><p>They will talk about...
<p>What will be the future of research into Alström syndrome, and would knowing more about this condition change the future of treatments for it? </p><p>In this episode, I have the pleasure of speaking with Laylaa Islam, who is a PhD researcher working on Alström syndrome at a cellular level. </p><p>Laylaa talks about the role of ALMS1 gene and how understanding the effect of changes in this gene on cells is critical in Alström syndrome research. In addition, we discuss the methods of studying this rare condition and how lab research can give us insi...
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