The Genetics Podcast

EP 129: Patient advocacy for genetic ALS and FTD with Jean Swidler, Executive Director of End the Legacy

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Episode notes

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:

To learn more about Sano’s Light the Way study, please navigate to this page:

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