Podcast
The Making the Most of Now podcast brings together members of the rare disease community to discuss their lives and conditions. We chat to those living with rare disease and those supporting those them to further our knowledge and learn more about how people manage, adapt to and overcome life in the face of rare disease.
The Making the Most of Now Podcast is available on all major podcast platforms and at https://makingthemostofnow.buzzsprout.com. You can also find some short clips from the podcast on our You Tube channel https://www.youtube.com/@makingthemostofnow3467
Latest Episodes
Claire Bergstrom Johnson – Neuroscientist, Entrepreneur and Change Maker – Making the Most of Now
In the latest episode of our podcast, I chat to Claire Bergstrom Johnson. A research scientist at the University of Oxford, Claire Bergstrom Johnson is making meaningful discoveries that are transforming how patients with a rare, often fatal autoimmune neuropathy are diagnosed and managed.After seeing her twin sister battle CIDP from the age of 7, Claire’s unrelenting desire to ensure others don’t have to go through what her sister did, shapes everything she does. From her commitment to research, to her approach to communicating her discoveries and encouraging scientific collaboration. Claire is a true leader and innovator in her field.Not content with driving innovation in her chosen field, Claire has channelled her entrepreneurial spirit into the Oxbridge Admissions Club. Helping support people to successfully be accepted and secure funding to study at Oxford and Cambridge Universities. Claire is making a true dent in the universe when it comes to increasing the diversity of people attending those universities. Claire is driven to make a difference in the world. She is truly inspiring and one to watch as she continues her research, thanks to funding from Inflammatory Neuropathies UK and the award of the Benson Fellowship by the GBS|CIDP Foundation International. If theres one key take away from this conversation it's that to further our understanding and learn failure is not just an option, it's a necessity. Wise words indeed!!
- Claire Bergstrom Johnson – Neuroscientist, Entrepreneur and Change Maker
- John Navarro – Finding your calling after diagnosis with Multifocal Motor Neuropathy (MMN)
- Ben Watson – From Guillain Barre Syndrome to Paralympic Gold – An Incredible Journey
- Michael Klim – From Olympic Champion to Rare Disease Champion – An Aussie swimming legend on life with CIDP
- Dr Jeff Allen – The latest in MMN research and drug trials
