Speaker: Diana & Sandra Gonzalez-Morett, Patient perspective on genetic testing and research
Please introduce yourself and your relationship to FTD-GRN
Diana & Sandra Gonzalez-Morett: Hi, my name is Sandra and I'm Diana. We're sisters and our mom was diagnosed with FTDGRN in 2018 after her neurologist had a few suspicions after listening to our family history. And during that time we were dealing with so much anticipatory grief as well as managing symptoms from her brain change, that it became very scary and daunting to find out that this might be genetic, and we're really grateful that our dad pushed for us to find out genetic results because it helped us understand our situation and our future.
Why do you think participating in clinical trials is important?
Diana & Sandra Gonzalez-Morett: Clinical trials are so important because ultimately we need to know how to overcome this thing, how to find the things that work, the things that don't work. From our perspective, we'd like to see more Hispanic and Latino participation because. We want to answer the question, why is dementia 1.5 times more likely in a Latino, family, 2 times more likely in an African American family? We just need to figure out what's going on here. Yeah, and we need to end FTD and we can't do it alone, so we need each other as much as the researchers need us, we need them, so we can only do it together.
What has been your experience participating in FTD clinical trials, either a care partner or as a participant yourself?
Diana & Sandra Gonzalez-Morett: A clinical trial really brought us hope, and we felt like if we could get our mom into a clinical trial, that we were one step closer to not losing her. And one of our mom's symptoms with FTD was binge eating, so she gained a lot of weight, and unfortunately that made her ineligible for a trial that we were trying to get her into, and we did as a family, we band together and we worked very hard and we cared for her, In a way that allowed her to lose some weight and get, get her eligible, but by that point, she was not eligible because she was too far advanced, which was very heartbreaking for all of us. But at the same time, we were still hopeful that somebody else was in the trials, and we could find hope for the future and as a genetic family, hope for our future family. And overall we've had wonderful experiences. We've had very caring doctors and clinicians, We're very fortunate that we had the best of the best, and still have the best of the best. So overall. 10 out of 10, yeah.
What do you think everyone should know about clinical trials when considering whether to participate?
Diana & Sandra Gonzalez-Morett: I think that this is 100% your choice. I think that's so important to know, and to ask yourself whether you and your family and your loved one who is diagnosed have capacity to do this, emotionally, physically, financially, is really important to consider. Yes, of course, we were always going to be pushing ourselves because no matter what, this is not normal. When you're in this, we're always pushing ourselves, but how much can you? And then when, if you, decide to do the clinical trial, know that you could always say no and leave, because sometimes it can be a lot for all of us and including the one person diagnosed. So I, I wish we had known that ahead of time, so know that ball's in your court. And ask questions. The person standing, sitting in front of you is just glad to answer any questions. And you can say, if you were sitting here, what's a question I haven't asked, or what do I need to know? Yeah, and like you said, asked to talk to people who have gone through this is also really great to get other people's lived experiences. Absolutely.
Why is genetic testing important for individuals and families impacted by FTD?
Diana & Sandra Gonzalez-Morett: Genetic testing, first of all, helped us finalize that diagnosis for our mom. So just that is a relief. And it was important for us to know what the future could bring, why she developed these symptoms, why she developed this disease, and then knowing that each of us had a 50% chance, gave us. Sort of a freedom in a way to know that this is something that we could plan for, and it was helpful for us to tell our family too that this could be, in their future and for them to get tested as well. And then again from the Hispanic Latino lens, We want to know why, if there is a predominance in certain countries, these types of things are important to, figure out this disease. Yeah, and I think it was really important for my journey for genetic testing. I had to really look at myself and had to ask myself hard questions and eventually really got to know myself more and learned that if I was doing my job of taking care of myself, I already love myself as a whole. So, I think going through the genetic testing process was actually something that was really challenging, but also, brought me closer to myself. And one thing that our genetic counselor told us, there's nothing, nothing's changed between the moment before and the moment after, so you, you're still you.
