Genetic Link for FSGS

[Deanne]

My family took part in a study to try to identify the genetic links for FSGS. We were asked to participate after my nephew was diagnosed a few years ago. They've made a bit of progress. I got the attached newsletter in email today.

[RichardMEL]

Thanks for posting this short newsletter! Very interesting indeed.. Obviously early days but every little step like this helps find out more about these diseases, the causes and hopefully better treatments and eventually either cures and/or ways to stop this.

Obviously that they have only identified these genetic "markers" associated with 10-15% of patients there's still a lot that is unknown, and a lot more work to go - but it's a start!

Personally I am always happy to take part in such studies if it can help even a little bit - so kudos to you and your family for being part of it!

[Deanne]

Our involvement was pretty easy. They only asked for a vial of blood. I think my family fits into the 10 - 15%. When my sisters were starting the process to be donors for me, my transplant center asked for information from the study to see which sibling might be a better donor. They were able to say that my older sister didn't carry the gene and would be a better donor / less chance of recurrance post-transplant.