Epilepsy Sparks Insights
Sparking interest and understanding in the epilepsies whilst bridging the communication gap between epilepsy patients, clinicians, scientists, geneticists – and the world. Hosted by Torie Robinson. **NOT FOR CLINICAL OR PATIENT DECISION-MAKING* Visit www.torierobinson.com & www.epilepsysparks.com.
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Episodes
Thursday Aug 18, 2022
Thursday Aug 18, 2022
Talking to scientists Moran Rubinstein from Tel Aviv University in Israel and Eric Krema from Universite de Montpellier in France who together work on a project into gene therapy for the rare genetic epilepsy Dravet Syndrome. They speak of their research, its exciting outcomes, and the positive impact that this could have on treatments for patients!If you haven't yet seen the first in this set of two episodes then check it out!------------------------------------------👉🏻 T-shirts: https://epilepsy-sparks.creator-spring.com ------------------------------------------More about Moran & Eric: 👇🏻https://www.torierobinson.com/epilepsy-sparks-insights/moran-rubinstein-eric-kremer-02------------------------------------------Don’t understand all the terms used? Check out the Epilepsy Sparks Glossary! 👇🏻https://www.epilepsysparks.com/glossary------------------------------------------Chapters 📖00:00 Intro00:37 How the therapy shall be used02:16 Therapy for children and adults03:05 Use in other epilepsies04:32 Patents and alterations05:17 Pharma companies06:11 Safety: the long journey from mice to patients07:17 Success, editing & retesting the therapy08:01 Treating the cause rather than the symptoms08:43 Where and when to inject the virus - an analogy10:42 Relating as a patient without Dravet12:02 Next steps with pharma & governments14:13 Special thanks----------------------------------------
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Thursday Aug 11, 2022
Thursday Aug 11, 2022
Talking to scientists Moran Rubinstein from Tel Aviv University in Israel and Eric Krema from Universite de Montpellier in France who together work on a project into gene therapy for the rare genetic epilepsy Dravet Syndrome. They speak of their research, its exciting outcomes, and the positive impact that this could have on treatments for patients!
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More about Moran & Eric:
https://www.torierobinson.com/epilepsy-sparks-insights/moran-rubinstein-eric-kremer-01
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Glossary:
There are many terms used in this recording which you can find in the Epilepsy Sparks Glossary: https://www.epilepsysparks.com/glossary
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Follow Torie on:
- Twitter: https://twitter.com/torierobinson10
- LinkedIn: https://www.linkedin.com/torierobinson
- Instagram: https://www.instagram.com/torierobinson10
- Facebook: https://www.facebook.com/TorieRobinsonSpeaker
- Check out the website: https://www.torierobinson.com
Thursday Aug 04, 2022
Thursday Aug 04, 2022
Peadiatric neurophysiologist from Bambino Gesù Children Hospital, Rome, Luca De Palma, explains to us his pre-surgical evaluation of children being considered for epilepsy surgery, the potential risks and benefits of having surgery, and the benefits of having surgery earlier in life.
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More about Luca:
https://www.torierobinson.com/epilepsy-sparks-insights/luca-de-silva-01
---
Glossary:
There are many terms used in this recording which you can find in the Epilepsy Sparks Glossary: https://www.epilepsysparks.com/glossary
---
Follow Torie on:
- Twitter: https://twitter.com/torierobinson10
- LinkedIn: https://www.linkedin.com/torierobinson
- Instagram: https://www.instagram.com/torierobinson10
- Facebook: https://www.facebook.com/TorieRobinsonSpeaker
- Check out the website: https://www.torierobinson.com
Thursday Jul 28, 2022
Thursday Jul 28, 2022
Peadiatric neurologist & epilepsy surgery specialist from Bambino Gesù Children Hospital, Rome, Luca De Palma, explains to us his pre-surgical evaluation of children being considered for epilepsy surgery, the potential risks and benefits of having surgery, and the benefits of having surgery earlier in life.
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More about Luca:
https://www.torierobinson.com/epilepsy-sparks-insights/luca-de-silva-01
---
Glossary:
There are many terms used in this recording which you can find in the Epilepsy Sparks Glossary: https://www.epilepsysparks.com/glossary
---
Follow Torie on:
- Twitter: https://twitter.com/torierobinson10
- LinkedIn: https://www.linkedin.com/torierobinson
- Instagram: https://www.instagram.com/torierobinson10
- Facebook: https://www.facebook.com/TorieRobinsonSpeaker
- Check out the website: https://www.torierobinson.com
Thursday Jul 21, 2022
Thursday Jul 21, 2022
Peadiatric neurologist and Assistant Professor at Gazi University, Esra Serdaroglu, tells us about the exciting treatment for some epilepsies called VNS (or vagus nerve stimulation). Esra speaks of the simple surgery, potential side effects, and incredibly positive impacts that so many children experience when it comes to seizure control and even mood. Esra also tells us about her research into the impact of VNS on children when it comes to sleep, appetite, and overall quality of life.---More about Esra: https://www.torierobinson.com/epilepsy-sparks-insights/Esra-Serdaroglu---Glossary:There are many terms used in this recording which you can find in the Epilepsy Sparks Glossary: https://www.epilepsysparks.com/glossary---Follow Torie on:- Twitter: https://twitter.com/torierobinson10- LinkedIn: https://www.linkedin.com/torierobinson- Instagram: https://www.instagram.com/torierobinson10- Facebook: https://www.facebook.com/TorieRobinsonSpeaker- Check out the website: https://www.torierobinson.com
Thursday Jul 14, 2022
Thursday Jul 14, 2022
Upcoming clinical geneticist Katrine Johannesen - from the Danish Epilepsy Center - explains to us the value of genetic testing for adults with refractory epilepsy. Interview featured on podcast, YouTube, and website. See links below. ---More about Katrine: https://www.torierobinson.com/epilepsy-sparks-insights/katrine-johannesen---Glossary:There are many terms used in this recording which you can find in the Epilepsy Sparks Glossary: https://www.epilepsysparks.com/glossary---Follow Torie on:- Twitter: https://twitter.com/torierobinson10- LinkedIn: https://www.linkedin.com/torierobinson- Instagram: https://www.instagram.com/torierobinson10- Facebook: https://www.facebook.com/TorieRobinsonSpeaker- Check out the website: https://www.torierobinson.com
Thursday Jul 07, 2022
Thursday Jul 07, 2022
Who knew that a genetic issue restricting glucose absorption (to the brain) could cause an epilepsy?! Today hear Kathleen Gorman tell us about genetic epilepsies - including the rare genetic epilepsy GLUT1 Deficiency Disorder.---More about Kathleen: https://www.torierobinson.com/epilepsy-sparks-insights/kathleen-gorman---Glossary:There are many terms used in this recording which you can find in the Epilepsy Sparks Glossary: https://www.epilepsysparks.com/glossary---Follow Torie on:- Twitter: https://twitter.com/torierobinson10- LinkedIn: https://www.linkedin.com/torierobinson- Instagram: https://www.instagram.com/torierobinson10- Facebook: https://www.facebook.com/TorieRobinsonSpeaker- Check out the website: https://www.torierobinson.com
Thursday Jun 30, 2022
Thursday Jun 30, 2022
Accurately diagnosing epilepsy can be a challenge. Are the "episodes" NEAD? Fainting? Behavioural issues? Michael Kentris explains to us the importance of and how to obtain a 100% accurate diagnosis, the risks of misdiagnosis, and the "weird questions" to ask patients! Click below for more information about Michael and for podcast contents. ---More about Michaelhttps://www.torierobinson.com/epilepsy-sparks-insights/michael-kentris-02---Glossary:There are many terms used in this recording which you can find in the Epilepsy Sparks Glossary: https://www.epilepsysparks.com/glossary---The websites: https://www.torierobinson.com & https://www.epilepsysparks.com---Follow Torie on:- Twitter: https://twitter.com/torierobinson10- LinkedIn: https://www.linkedin.com/torierobinson- Facebook: https://www.facebook.com/TorieRobinsonSpeaker- Instagram: https://www.instagram.com/torierobinson10
Thursday Jun 23, 2022
Thursday Jun 23, 2022
Accurately diagnosing epilepsy can be a huge challenge when a hospital is underresourced. Michael Kentris explains how he manages with only 3 EEG machines, his work training others, using telemedicine, and more. ---More about Michael: https://www.torierobinson.com/epilepsy-sparks-insights/michael-kentris-01---Glossary:There are many terms used in this recording which you can find in the Epilepsy Sparks Glossary: https://www.epilepsysparks.com/glossary---Follow Torie on:- Twitter: https://twitter.com/torierobinson10- LinkedIn: https://www.linkedin.com/torierobinson- Instagram: https://www.instagram.com/torierobinson10- Facebook: https://www.facebook.com/TorieRobinsonSpeaker- Check out the website: https://www.torierobinson.com
Thursday Jun 16, 2022
Thursday Jun 16, 2022
Hear why genetic epilepsy syndromes (largely found in young children) have been reclassified - and not without deep thought or consideration! With world-renowned peadiatric consultant neurologist & researcher Sameer Zuberi.---More about Sameer: https://www.torierobinson.com/epilepsy-sparks-insights/sameer-zuberi-02---Glossary:There are many terms used in this recording which you can find in the Epilepsy Sparks Glossary: https://www.epilepsysparks.com/glossary---Follow Torie on:- Twitter: https://twitter.com/torierobinson10- LinkedIn: https://www.linkedin.com/torierobinson- Instagram: https://www.instagram.com/torierobinson10- Facebook: https://www.facebook.com/TorieRobinsonSpeaker- Check out the website: https://www.torierobinson.com