How can we, humans, look at our relationship to nature differently? In season three of Going Wild, on top of stories about animals, we invite you to journey through the entire ecological web — from the tiniest of life forms to apex predators — alongside the scientists, activists and adventurers who study it. Wildlife biologist and host Dr. Rae Wynn-Grant has been studying wild animals in their natural habitats all over the world for years. Our award-winning podcast takes you inside the hidde ...
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EP 129: Patient advocacy for genetic ALS and FTD with Jean Swidler, Executive Director of End the Legacy
MP3•Thuis aflevering
Manage episode 410576724 series 2631947
Inhoud geleverd door Sano Genetics. Alle podcastinhoud, inclusief afleveringen, afbeeldingen en podcastbeschrijvingen, wordt rechtstreeks geüpload en geleverd door Sano Genetics of hun podcastplatformpartner. Als u denkt dat iemand uw auteursrechtelijk beschermde werk zonder uw toestemming gebruikt, kunt u het hier beschreven proces https://nl.player.fm/legal volgen.
0:00 Introduction
0:45 Jean’s personal experiences with family members with genetic ALS
10:00 Jean’s thoughts on the barriers and facilitators to providing treatment for those with genetic ALS
13:20 Insights into C9orf72, a common genetic determinant of ALS, and how it can also be associated with FTD
16:10 Jean’s experiences as an active advocate for those with genetic ALS and FTD
20:00 The evening of the playing field between patient advocates and researchers, as well as the importance of hearing both voices
23:40 Future challenges and priorities facing End the Legacy and tying into Sano’s Light the Way study
29:00 The push towards broad scale genetic testing for neurodegenerative conditions and potential legal concerns for preventative screenings
33:00 Lessons learned from advocacy groups for other genetic diseases like Huntington’s disease, Parkinson’s disease, and more
39:00 Final thoughts on End the Legacy, patient advocacy, and a message to those living with and/or researching genetic diseases
For more information about End the Legacy, please visit: https://www.endthelegacy.org/
To learn more about Sano’s Light the Way study, please navigate to this page: sanogenetics.com/light-the-way
Please consider rating and reviewing us on your chosen podcast listening platform!
187 afleveringen
MP3•Thuis aflevering
Manage episode 410576724 series 2631947
Inhoud geleverd door Sano Genetics. Alle podcastinhoud, inclusief afleveringen, afbeeldingen en podcastbeschrijvingen, wordt rechtstreeks geüpload en geleverd door Sano Genetics of hun podcastplatformpartner. Als u denkt dat iemand uw auteursrechtelijk beschermde werk zonder uw toestemming gebruikt, kunt u het hier beschreven proces https://nl.player.fm/legal volgen.
0:00 Introduction
0:45 Jean’s personal experiences with family members with genetic ALS
10:00 Jean’s thoughts on the barriers and facilitators to providing treatment for those with genetic ALS
13:20 Insights into C9orf72, a common genetic determinant of ALS, and how it can also be associated with FTD
16:10 Jean’s experiences as an active advocate for those with genetic ALS and FTD
20:00 The evening of the playing field between patient advocates and researchers, as well as the importance of hearing both voices
23:40 Future challenges and priorities facing End the Legacy and tying into Sano’s Light the Way study
29:00 The push towards broad scale genetic testing for neurodegenerative conditions and potential legal concerns for preventative screenings
33:00 Lessons learned from advocacy groups for other genetic diseases like Huntington’s disease, Parkinson’s disease, and more
39:00 Final thoughts on End the Legacy, patient advocacy, and a message to those living with and/or researching genetic diseases
For more information about End the Legacy, please visit: https://www.endthelegacy.org/
To learn more about Sano’s Light the Way study, please navigate to this page: sanogenetics.com/light-the-way
Please consider rating and reviewing us on your chosen podcast listening platform!
187 afleveringen
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