u/Worth-Bullfrog-264

Hey everyone,

My dad is in the later stages of FTD and was diagnosed in his mid-60s. He recently had genetic testing/a dementia panel done, which came back negative for all of the tested variants.

However, we have some reason to suspect there may be a familial/genetic component, since his mother developed very similar symptoms at around a similar age.

Unfortunately, my dad likely has only months to live, so we're trying to figure out what we should do while we still can to preserve as much potentially useful genetic/biological information as possible.

Some of the options we're considering:

1. DNA banking
2. Ambry Genetics Patient for Life
3. Whole-genome sequencing (WGS)
4. Blood banking — is preserving whole blood or PBMCs useful?
5. A second independent genetic panel
6. Preserving other tissue, such as skin fibroblasts, if feasible

For doctors, genetic counselors, researchers, or anyone who has dealt with a similar situation:

• What would you prioritize preserving/testing before he passes?
• Are there particular types of samples that are especially valuable for future genetic testing or research?
• Are there institutions or services you'd recommend for this?

We're mainly trying to avoid realizing after the fact that there was something important we could have preserved or tested while he was still alive.

Any advice would be greatly appreciated.

Hey everyone,

My dad is in the later stages of FTD and was diagnosed in his mid-60s. He recently had genetic testing/a dementia panel done, which came back negative all tested variants.

However, we have some reason to suspect there may be a genetics/familial component since his mother developed very similar symptoms at around a similar age.

Unfortunately, my dad likely has only months to live, so we're trying to figure out what we should do now, while we still can, to preserve as much useful genetic/biological information as possible.

Some options we're considering:

1. DNA banking
2. Ambry Genetics Patient for Life
3. Whole-genome sequencing (WGS)
4. Blood banking - is this a thing?
5. A second independent genetic panel

In particular for people who have gone through similar situations:

• What did you preserve/test?
• Which services/institutions did you use?
• Was there anything you wish you'd done before your family member passed?

Any advice here is appreciated!