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

In this episode, Patrick welcomes Jean Swidler, the Founder, Executive Director, and Chair of End the Legacy. End the Legacy is a patient-led organization dedicated to articulating and supporting the needs and interests of the genetic ALS and FTD communities. If you are interested in patient advocacy or keen on learning about recent therapeutic developments for those with neurodegenerative conditions, you will want to listen to this episode!

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

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