A conversation with a genetic counselor: Could the ALS in my family be genetic?

Navigating ALS care can be complicated and filled with many complex decisions, including whether genetic testing is right for you. Join us for a discussion with genetic counselor Laynie Dratch, ScM CGC, as she describes the role of a genetic counselor and addresses common questions about the genetics of ALS-FTD spectrum disorders, the genetic testing process, and more. Laynie welcomes you to come with questions for discussion.
Time Stamps:
0:00- 5:02 - Introduction to Les Turner ALS Foundation
5:03 - 6:29 - Introduction to presentation
6:30 - 6:55 - Defining some terms
6:56- 8:10 - The big question: Is ALS genetic?
8:11- 9:16- Genes are the instructional manual of the body
9:17- 10:25 - ALS and Genetics
10:26- 11:37- Defing the ALS- FTD Spectrum
11:38- 13:16 - Frontotemporal Degeneration - FTD
13:17- 16:14 - Why does family history matter?
16:15- 16:41 - Over 30 genes Implicated in ALS Spectrum Disorders
16:42- 19:17- Inheritance Patterns
19:18 -21:23 What is familial versus sporadic ALS?
21:24- 23:11 - What is genetic counseling?
23:12 - 23:52 - The importance of offering genetic counseling and testing in ALS
23:53- 23:55- ALS genetic counseling and testing guidelines
23:56- 24:48 - Geographic Diversity in ALS and genetics
24:49 -27:37 Genomic Medicine is here
27:37-28:41- Nuances of genetic testing in ALS
28:41-30:42 - Types of results from genetic testing
30:43- 33:35 - Should I share my test results?
33:36 - 38:42- Predictive genetic testing
38:43- 40:47- Genetic discrimination
40:48- 44:14- What is my likelihood of developing ALS?
44:14- 45:10 - What if my family does not have a known genetic cause?
45:11- 46:41 - Can I and should I get tested?
46:42-47:06 - Who should have a genetic counseling appointment?
47:07 - 48:59- Does everyone with ALS have a genetic counselor?
49:02 - 49:21 - How to prepare for a genetic counseling appointment
49:22- 51:41- Testing logistics
51:42- 52:26 How does genetic counseling help with research?
52:27- 53:26 - A genetic diagnosis can feel like a new journey
53:27 54:40 Summary
54:41 -1:03:19 - Q&A