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