Betsy Hall for Patient perspective on genetic testing and research

Speaker: Betsy Hall

Betsy Hall: Hi, my name is Betsy Hall. My relationship with FT DJ RN is that my mother was diagnosed with FTD in 2008. Shortly after that, my grandmother was also diagnosed with FTD. We quickly found out that our family does in fact carry the GRN mutation and I am at risk of developing FTD myself as well as my siblings and other family members.

Betsy Hall: I believe that participating in clinical trials is incredibly important because it is the pathway to a cure. Um It's a cure for our families. It's a cure for the thousands of other families. Who knows it could be a gateway to treatments of more than just FTDGRN. But I absolutely know that this is the most horrific disease I have ever witnessed. And clinical trials is the pathway to stop them.

Betsy Hall: My participation and experience in FTD clinical trials has been very positive. I can uh speak to myself personally as well as observationally of other friends and family members that I know involved in clinical trials. And I think what's important for everybody to know is it's while there is maybe some anxiety leading up to it, the people at the trials are so incredibly kind, they're incredibly professional, they're incredibly thorough and they really make you feel extremely comfortable in the process. And for me, it helps me sleep at night because when you live with a genetic predisposition, a lot of your future um isn't in your hands anymore. But this is something that I can do today to maybe prevent getting FTD in the future, prevent my Children from getting FTD in the future. Um Who knows? But I know that I can sleep at night knowing that I am doing all that I can do.

Betsy Hall: What do I think everyone should know about clinical trials when considering whether to participate in one or not? I think everybody should know what their, their benefits are and what impact that clinical trial may have, but also what the risks are. Uh I think the best way to, um, do this is see if you can maybe talk to somebody who is in the trial already, um, or has a loved one in the trial or just try to gather as many questions as possible and ask them understand what's the impact going to be on my life? What kind of time will it take? Um, if I'm in this trial, will that, um, not, will that limit my ability to be in other trials? Um Do I have to participate in every part of the trial or are there certain opt out elements within the trial? Do I need to know my results to be in this trial? Um So knowing kind of the whole picture from beginning to end, how long the trial is going to last? For example, it could really help make your decision as to whether it's right for you or not?

Betsy Hall: Why is genetic testing important, important for individuals and families impacted by dementia for those that are already showing symptoms? Uh A genetic test can confirm the diagnosis or confirm a misdiagnosis. And um for my family, it confirmed that we did in fact have GRN which absolutely was scary, but it also brought relief because we were already living the nightmare. And at least now we had a name to the nightmare and then we could seek out a community within the F TV. GRN and find other families that have also been impacted. Um and have that support of other people that are that understand what we're going through. It also opens up the doors of clinical trials and even if you don't want to know the results because maybe you're non symptomatic right now, but you just know that it's, you have a risk, you're at risk of having the gene, you can join certain trials without knowing the results. And that way you can still benefit science, you can benefit research, you can benefit yourself in your future and others futures. Um but maintain the protection um for whatever your personal decisions are because it is a very personal decision, but there are a lot of positives about getting tested.