0:00 Introduction0:45 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 FTD16:10 Jean’s experiences as an active advocate for those with genetic ALS and FTD20:00 The evening of the playing field between patient advocates and researchers, as well as the importance of hearing both voices23:40 Future challenges and priorities facing End the Legacy and tying into Sano’s Light the Way) study29:00 The push towards broad scale genetic testing for neurodegenerative conditions and potential legal concerns for preventative screenings33:00 Lessons learned from advocacy groups for other genetic diseases like Huntington’s disease, Parkinson’s disease, and more39**:00** Final thoughts on End the Legacy, patient advocacy, and a message to those living with and/or researching genetic diseasesFor 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!
