I'm Dying to Tell You
I'm Dying to Tell You
Carrying an ALS Gene: Mindy Uhrlaub’s Story of Hope & Action
What happens when you learn that your DNA carries the same mutation that led to a loved one’s battle with ALS? In this episode, I sit down with Mindy Uhrlaub, who discovered she is a carrier of the C9orf72 gene—the most common genetic cause of ALS and Frontotemporal Dementia. Mindy shares her emotional journey of genetic testing, the weight of living in the unknown and the unique challenges that come with being pre-symptomatic.
We dive into the mental and emotional impact of her hereditary disease, the stigma surrounding genetic conditions, and how humor, advocacy and community can help navigate these uncertainties. Mindy also talks about her work with End the Legacy, a patient led organization dedicated to the needs and interests of the Genetic ALS & FTD community.
This powerful conversation is a reminder that while genetics may shape our path, they don’t define who we are. Tune in for an honest, hopeful discussion about fear, resilience and finding purpose in the face of the unknown. Listen in and share with a friend. Hugs, Lorri
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Yeah, so you've had a busy day today. Thanks for fitting me in.
Speaker 2:It has been crazy. Today I just got off of a Zoom with ALS TDI and they're asking me if they can host a book tour event for me. So I'm very excited about that.
Speaker 1:Nice, nice, oh my gosh that's great, well, I want to talk all about the book. Oh my gosh, that's great. I want to talk all about the book. I've been wanting to talk to you for some time, so finally I've got the opportunity.
Speaker 2:I know it seems like we've known each other for like almost two years now and we just haven't done this and I'm so grateful to you. So thank you for having me on.
Speaker 1:Finally, I'm getting to people I've just had on my list and I've reached out to a while ago and I'm just kind of catching up. So it's good to be busy. Yeah, it's good to be busy. It's good to have so many people that I meet that inspire me, that I want to share them. You know you're one of them and you know it's good and it's bad, it's like, because a lot of people obviously are in our community, in our space, and are affected by ALS or FTD, and so that's that part sucks. But the good part is that so many people are brave and committed to helping other people and helping to educate other people about the reality. So, off the bat, I appreciate you so so much. I'm happy that you're here. Oh, thank you. You know, not everyone that's listening is a part of the ALS community, so why don't you explain where you're at in the ALS journey? You know, because you're unique, you're special.
Speaker 2:Okay. So ALS, as you know, is a neurologic disease. It's neurodegenerative, and most cases of ALS are sporadic, meaning it could affect anybody. But there is a percentage of us who's a gene mutation that sometimes carries other diseases like frontotemporal dementia or other things on it. So, for example, in my family my grandfather died of ALS and my mother died of ALS, and I have another family member related on my mom's side who is another genetic carrier. I'm a carrier and the name of our mutation is C9ORF72.
Speaker 2:It is what's called a repeat expansion and, without getting too far into the woods, it's basically that it's a gene mutation that just repeats itself, and so we are looking for a cure for our kind of mutation. But the catch is that there are more than 40 genes implicated in ALS and FTD, so there are some people who believe that all ALS has a genetic component to it. So we are important to the ALS community because we're sort of the low-hanging fruit because we know what causes our ALS community, because we're sort of the low-hanging fruit because we know what causes our ALS, and so that's kind of where I am in. My journey is sort of its own story, but we can get to that.
Speaker 1:Yeah Well, tell me about when you found out that you actually were a gene carrier.
Speaker 2:Okay. So the best way to describe it is to give you the backstory, which is that my mom started showing signs in 2016. She had what's called drop foot and she kept spraining her ankle and she was like, wouldn't it just be a total kick in the pants if I had ALS? And she sort of laughed it off and I was like, well, it's not genetic, is it? And she said no, it's not genetic, it's, you know, it's just one of those diseases that you know. Mother nature couldn't be that cruel that I would end up with ALS. Well, back then, the C9 or F72 gene had just been discovered, like three years before that. So she didn't even know that there was a gene that caused ALS and she started to develop these symptoms.
Speaker 2:As you know, with ALS there's a lot of misdiagnoses. So first they thought she had lupus, and then they thought she had carpal tunnel syndrome and they thought she had. You know, when her voice started to change, they thought she had a thyroglossal duct cyst and they recommended surgery. And so she went through all this treatment for two years, obviously progressing in her disease, and nobody wanted to diagnose her with ALS because they considered it to be a rare disease, which actually it really isn't, but that's a whole nother story, yeah, so finally, around 2018, I could see the writing on the wall. I could see that she had she clearly had ALS. I had done enough research about it and I was like I'm going to get a genetic test. And she's like, well, I'll get a genetic test. You know before you, and I knew that she wasn't one to delve into her medical stuff so much, but you know, she had kind of a shaky ALS diagnosis and I was like, forget it, I'm going to go do this. So we ended up getting our test results on the same day actually, and we both found out that we were carriers of the C9 or F72 gene mutation that causes ALS and FTD.
Speaker 2:And so when I found that out, it happened against the backdrop of a very dynamic situation at my house. I'm married, I have two children and my husband was going through chemotherapy for stage four lymphoma, and so he was in a life-threatening situation. My mom had ALS. She was sort of in her middle stages of ALS around 2018. You know, she was in a life-threatening situation and then my son had to be sent to a residential treatment facility, which meant that he was removed from the home and went to a residential treatment facility, which meant that he was removed from the home and went to a therapeutic boarding school, for reasons we don't have to go into, but many of them developmental, many of them neurodiverse and many of them behavioral.
Speaker 2:And so, with three first order relatives in life-threatening situations, I found out that I carried the gene for a fatal neurodegenerative disease, and at the time it didn't really affect me that much because I was in the trenches with my kid and with my husband and my mom. I was flying back and forth to Florida to be with my mom and I was my husband's primary caregiver and my son's primary caregiver, and so I couldn't really care for myself very well, but I knew enough to enroll in as much longitudinal research as I could, because I knew that sometime when things calmed down in my life, that I would be called on to do research, and so that's what I did, and I started writing this memoir about what it was like being in this situation where everyone around me was about to die and how that affected me. And so that's where I was between like 2018 and 2020. You know, those years were very, very hard, and my mom passed away on January 10th 2020, after like a five-year battle with ALS, and it was devastating, as I'm sure you can imagine, but it made me redouble my efforts to find a cure, because it wasn't I mean, I knew that my kids were at risk, but it really hit me hard because I was like, well, I think age of onset for a C9 ALS is something like 55, you know, and I was like 50 at the time, you know, or 51 when she died.
Speaker 2:So I joined a bunch of groups at IAM ALS and they had a familial group and it was run by a couple of, you know, heavy hitting activists here in the Bay area and, um, over the years, it became really clear that we needed a space for ourselves, because IAM ALS is wonderful, but they didn't put a lot of focus on the familial group and we wanted something more that would also speak to FTD, and so we started our own organization called End the Legacy, and I'm one of the founding members of that. It started maybe two and a half or three years ago, and so during the last few years, I just have been throwing everything that I have at this disease and, incidentally, I should tell you, my husband is fine, by the way he? He's fine. He actually built himself a cabin up in the mountains so he could enjoy himself fishing, which is, you know, wonderful and life affirming. My son, ethan, is actually doing really well.
Speaker 2:He has a job, he's living independently and you know he's doing very well, and my younger son, Alex, who, should, you know, not be ignored, he and I were sort of the two-legged stool through all of this and you know he's doing amazing things. He's in music school right now. So, yeah, so life is like really large right now, but it wasn't large for a long time as I'm sure you can imagine.
Speaker 1:Yeah, and. I wanted. I want to talk about how you were able to think about yourself during those years when you and your mother found out that you were ALS gene carriers. Your mother was sick, you had everything going on within your family I mean like for yourself individually at that time, where you just forced to focus on other people and not yourself. And then after time it was like, okay, now I can kind of focus on me and my future and how I am processing my own future.
Speaker 2:Yeah, it's a good question. I mean, actually, you know, being a mother, you probably know, you know everything that you do, you're always worried about how it's going to impact your children. So my children were always at the front of my mind, as was my husband, as was my mom. My children were always at the front of my mind, as was my husband, as was my mom. And you know, I've always been a caregiver in most situations, even among my friends, and I played in a band and I was always kind of taking the mother role. So really I always put other people first.
Speaker 2:And the only time when I ever worried about my own genetic status during those years when I was in the trenches with my kid and my husband and my mom, was when I would look at my husband and he was doing really badly and you know he was like at his nadir period during his cancer treatment and I thought, oh my God, what if he dies? Yes, and what if I develop symptoms? What is going to happen with my children? And you know they were young then, they were like 12 and 14. So it wasn't like, oh, they'll make it through, they can just fend for themselves. I mean, you know I was looking at an ALS diagnosis and my husband was very sick and my mom was dying. So who was going to take care of my kids if we all died? So that's really the only time I ever worried about myself. In fact, I very rarely worry about myself still.
Speaker 1:Yeah, well, I get it. My guys were 11 and 13 when I was diagnosed, so you know, really close in age with yours. And for the first few months, while we were going from doctor to doctor and not knowing what we were dealing with, they didn't know anything. And as soon as I got the diagnosis, it was like a light turned on. Everything changed from me to them. How are they going to react? What are they going to react? What are they going to say? Are they going to act out? You know what does this mean to them. On and on and on, and it just is. I think, as a mother, as a parent, instinctively, that the focus just shifts and you're not worrying about the diagnosis part as much as you are the fallout, you know, in the aftermath.
Speaker 2:So right, yeah and I think we just we're like that moms are, we're socialized to be like that and I think we're innately like that also yeah, for those that don't know what, getting tested positive for the gene, can you explain like does that mean you're going to get it for sure?
Speaker 1:What's the percentage and talk a little bit about what does it mean exactly?
Speaker 2:It's a developing science, actually science. Actually. You know, different genes have different penetrance, meaning that, like, you could have the gene and not develop symptoms, or you could have the gene and develop symptoms. What's interesting about things like, say, SOD1, which is a different gene that they discovered way before they discovered my gene, is that some of the forms are highly penetrant and it's something like 90% chance that you're going to develop the disease. So it's pretty gnarly right.
Speaker 2:But with C9, there's new research. I thought I had a 95% chance of developing ALS by the time I was 58 or 59, but new research is now showing that, depending on your family history and the penetrance with your family, that actually has a lot to do with how, what your chances are of getting it. And like, say that you have the generation above you and there are four siblings and all four have ALS or FTD, then your chances of getting it are probably pretty high, Right, but if there's only one or two, then I mean, I think it actually does play into. You know, they used to say your family's ALS is not your ALS, but actually it is in the case of C9. And so we're going to find out.
Speaker 2:I do have, like I said other family members who are gene carriers, and one is symptomatic and so, but to be fair, she's 75. So that is, it's a. You know, age of onset has to do with it. Also, my mom's age of onset was about 70. And so that bodes pretty well for me, I guess. Or not well, but better or less horrible, I don't know how you even say it. Right, right, right horrible.
Speaker 1:I don't know how you even say it. Right, right, right. So you know we were talking about our children and how the diagnosis and the worry and you know stress, the focus shifts from ourselves to our children. I remember reading you know, one of the things that you did with the information that you received about being a gene carrier is that you waited, that you held on to that because you obviously were afraid of how it was going to affect the children. So tell me a little bit about that time period of having to carry that burden of having and carrying that burden.
Speaker 2:So you know I mentioned that my husband had cancer at the time and both kids had their own mental health issues around that because, you know, he went through chemo, he got really sick, he lost his hair and little kids see that right and so they start to worry that their dad's going to die and they were watching their nanny, my mom, die of ALS. And you know, both kids are very sensitive One's neurodiverse and I just didn't know how they were going to handle it. And we talked to a child psychiatrist and basically his deal was like don't tell them anything until your disease becomes something where medical intervention is a thing. And I said, well, what would that mean? Because they don't have medicine for somebody like me, you know, like someone who's a gene carrier just falls through the cracks. And he said if you ever have to travel or be away for more than a day for your genetic mutation, that's when you tell your kids. You know, fortunately or unfortunately, my mom passed away in 2020, in the height of the pandemic, and nobody was really recruiting for any sort of testing. It was like I couldn't get on an airplane and go anywhere until I had a vaccine and then it was, you know, safe to fly and all the stuff. Because the last thing I wanted to do was bring like COVID home to my husband who was just recovering from cancer, right.
Speaker 2:And so when I was accepted into longitudinal research at Mass General that's the dials program, dominant inherited ALS program I knew I had to fly out to Boston. And only then did I tell them and I told them not the full truth but most of the truth. I said you know, there are people in families where there's ALS and they want to research those families, they want to enroll us in research to help understand the way that ALS works in our family. And the kids were kind of like oh, okay, and at that point they were like maybe 17 and 15, right, so they were a little bit older, they weren't, they were kind of post-pubescent, you know, like not very moody and still sensitive. But they were like in a better space to receive the news. And I said I'm going to Massachusetts to go and donate blood and some tissue samples and I'm going to do some tests just to make sure you know that like I'm okay. And I said you guys understand that like in our family, you know, als does run in the family and you know, nani had it, my grandfather had it, and so there's a chance that I'm a carrier of this gene. And they said, well, are you going to die? And I said, well, you know everybody dies, but no, I'm not going to die of ALS and I'm like ALS and I'm like. I still maintain that I'm not going to die of ALS. Of course, that's a great question for later and we can talk about that too. But you know, I said I'm going to fly to Boston, I'm going to do all this stuff and research, and you know we're going to try and find a cure for this disease that killed your Nani.
Speaker 2:And they had both learned about genetics because they had been in middle school and part of high school. And you know, ethan, my older son, was like so there's a gene in the family that causes ALS. And I said yeah, and he said and you're a carrier? I said, well, you know, reluctantly, said yes, I am a carrier, but it does not mean I'm going to develop the disease and it doesn't mean anything Like it doesn't mean that. And so and that's the truth, and he and he said, well, I mean, could you get it? And I said yeah, I could. And then the younger one, alex, said well, if it's genetic, like could we get it?
Speaker 1:And.
Speaker 2:I said well, not yet, because you're kids and ALS only affects adults like 40 and up. So you know there's lots of reasons why you won't get it and I'll tell you what they are. And I went on to enumerate that just because I have the gene doesn't mean I'm going to get the disease. No-transcript get it. And by participating in research I'm going to make sure that you guys aren't going to get it. And they both were kind of quiet for a second. And then my younger son got up and he put his arms around me this was at the dinner table, you know. He put his arms around me and he said thank you so much for keeping us safe. So it was like really clear that they both got it.
Speaker 1:You know they both got it so yeah, wow, that's tough, that's tough. They're like we trust you, we know you love us, we know you will protect us, but yet what is it saying? What are the odds? Is there a chance? Oh, that's a lot it's a lot.
Speaker 2:Well, it's kind of interesting because, like my younger son has actually participated in the same research I have. Like he, they took children through some of the ftd research and so he enrolled in research and he's concerned about me, that he wants to see a cure for me and I want to see a cure for him, and so you know he gets it, and I think that activism comes in a lot of different forms, right.
Speaker 1:Yeah, yeah. So what is all of this tough conversation, Jen?
Speaker 2:for your relationship with your sons this tough conversation, Jen, for your relationship with your sons. I think it's made it a much more precious relationship Like we're. We're closer as a result. I think that sometimes they get stressed out about it and I'm there to talk them through that and sometimes all of my activism actually stresses them out a little bit because I'm always talking about it and I'm sort of like stresses them out a little bit because I'm always talking about it and I'm sort of like, um, I'm kind of a honey badger about it.
Speaker 1:So, yeah, uh-huh, yeah, that's exactly what I was thinking too. Yeah, I mean same. I was telling someone earlier today, you know, thursday, I mean 21 years since I've had ALS. My guys have been with me with ALS, you know, more than without. Most of their life has been with me having ALS, so it's kind of in their life. Although I am very lucky in the fact that I'm a slow progressor for kids, they have still had that on their mind every day, you know. So I get it. You know we're talking a little bit about relationships and what the knowledge of having ALS or being a gene carrier can do, and I've read some of the things that you have said about your observations with your own relationships and I really, really appreciate that because I've seen a lot over 21 years. Can you share some examples where people have reacted in a way that you didn't expect?
Speaker 2:Yeah, I mean, you know like my brother and I are very close and when I told him I was a carrier, his response was well, how can I help you? You know, and I think that you can, you can respond to that information a lot of different ways. Like he could have gone and like hidden under the bed or something if he wanted to.
Speaker 2:but yeah that was amazing and I wasn't surprised because he's that kind of guy. Um, you know, my husband is a cowboy, uh, actually born and raised on the Western slope of Colorado, and he was just like, well, no reason to worry until the doctor tells you to worry, you know, so sort of like. He was just very much like. He's just like, yeah, it's nothing, it's no big deal, and um, and of course you know he was going through cancer at the time.
Speaker 2:So, yeah, he had other fish to fry but um, but, but you know, I had a friend who, um, I ran into, like maybe the day after I had the genetic test results back, and this was a friend who knew that my husband was sick and who knew that my mom was sick and who knew that my child was sick. And I ran into him, like at the grocery store or something, and he's like, hey, how's it going? I'm like, well, um, you know, I just found out that I'm a carrier of ALS and, um, so, yeah, there's that. And he said, well, what the hell am I supposed to do with that information? And I was just like I just said, well, um, I guess nothing. Really. Do you know where the yogurt is? You know, like?
Speaker 2:it was like it was just like this horrible conversation that wasn't even really conversation. And yeah, I mean, I've had definitely people say, like you know, I'm so, so sorry that you have to live with that. Like, sometimes I get a little bit mad about that, like I get I get sort of defensive, like actually having my knowing my genetic status has been like the best thing to ever happen to me and I I would rather be asked how do you feel about that, or what are you going to do about that, rather than what am I, the receiver of the news, going to do about that?
Speaker 1:You know, yeah, right, right, right. Well, I mean I know that you said that some people have fallen away, you know, and they don't know what to say. I mean you would see that when someone has ALS and they're in the trenches of ALS or even in the beginning stages, that people just stop coming around. They don't know what to say, they don't know what to do, they're afraid to say the wrong thing, so they do nothing at all. So it's kind of like maybe even a little more dicey when you are a gene carrier and you have this burden that perhaps you can get it. You don't know. It's like, oh, now we really don't know what to say. You know that makes it hard for people. You know that makes it hard for people. So I guess, what does support really look like for someone that's a gene carrier, that doesn't have symptoms, that doesn't know for sure what their future is going to hold? What do you say?
Speaker 2:Well, okay, there's one thing that I failed to mention, which is just because I don't have symptoms. If I pass it on to my children, they could have symptoms. So even an asymptomatic gene carrier can pass on symptomatic ALS genes to their offspring. So this is never going to be a done deal for us until there's a cure. And so what does support look like? You know, for me I would rather have people ask questions than tell me how they feel, you know, but at the same time I like for it to be a dialogue.
Speaker 2:Support for me right now looks like if I'm donating to a cause or I'm doing a fundraiser. You know, obviously it's easy to write a check, even if it's a tiny check. So throwing money at ALS Research actually really does help. You know we started an organization called End the Legacy and you know to be to show up to one of those meetings or be put on the mailing list, like that's a really important thing for me, because my family doesn't really even know what I'm going through.
Speaker 2:So you know for them to um to show up on a peer support meeting or whatever it's it's really cool, like, um other ways to support somebody like me. Obviously you could buy my book, which would be really cool, um, but you know, I feel very supported by my friends. Like, like I, I play Mahjong and like my Mahjong group friends always ask, like how's it going, how's the good fight going? You know, and I'm going to be um honored at an event at in Chicago in april and I've got friends who are flying out there with me and like that's really above and beyond uh the call of duty.
Speaker 2:So yeah, I mean that that kind of thing yeah, just a recognition and congratulations on that honor.
Speaker 1:Uh, well, well deserved.
Speaker 1:But yeah just taking interest, I think, showing support in any way, but showing active interest. Like you said, ask me the questions, show that you're you're interested, like you're really sincerely interested in how you are dealing with not only your own uncertainty but a whole other level. Like you said, when the kids are involved, how will this affect them in the future? Will it affect them? Will they have ALS? Will they have the gene? Will it develop into ALS? That's just a whole other level and I always say that you know you don't know what you don't know. Okay, so I don't expect anyone to understand what I'm going through, what's in my mind, because you're literally not in my head. But to your point, it sure is nice when someone tries to understand what's going on in my head or my heart, you know, especially during hard times. So I think that's kind of like no matter what, just a basic rule of a relationship, any relationship.
Speaker 2:Well, yeah, and what's kind of interesting is that people with ALS and people who carry genetic mutations for ALS and FTD, we have lives outside of ALS, but we don't really ever get a break from the disease. Um, we don't really ever get a break from the disease, you know, and if, when you carry a gene, you don't get a break because your mom or dad didn't get a break, because your grandparent didn't get a break, because your kids won't get a break, because you know, and so we, as you probably know, people like you, people like me, we don't ever get a vacation from it. You know, this is like our lives for the rest of our lives, and I think that it's just like when you ask somebody how's your work, like, this is my work, this is what I do full time right now. Yeah, like ALS advocacy is what I do, and it doesn't mean I draw a big paycheck from it, but it pays dividends way better than any paycheck ever could. So I'd like to be asked about it oh, that's perfect.
Speaker 1:I love that, love, love, love that. Um, you mentioned your book and I am super excited that you have taken the time and the energy to write a book, and I know it's coming out this year and it's called Last Nerve, last Nerve.
Speaker 2:When is it coming out. It's coming out on May 27th, just in time for Lou Gehrig Day, and I will be going on tour at the beginning of June and will probably be on book tour throughout the summer.
Speaker 1:Awesome. Okay, where can we go to follow your tour?
Speaker 2:The best place to follow me right now is on Instagram. I'm at Mindy Writes W-R-I-T-E-S one number one, and so all of my ALS stuff is on there. Yeah, so the book will be on Amazon and your local bookseller can also order it.
Speaker 1:Okay, perfect, and I'll put a link in the show notes with your Instagram handle.
Speaker 2:Thank you.
Speaker 1:The show notes are available on Facebook and the website, both at. I'm dying to tell you podcast, so tell me about the book. How did you get inspired to say, okay, this is what I want to do, okay, so?
Speaker 2:I've always been a writer. I played in a band for a long time and wrote music, I wrote a screenplay, I've written essays and I had a novel come out five years ago called Unnatural Resources so I've always been a writer. You know, I started keeping a journal and then I was like wait a minute, this journal is actually kind of interesting, so I started rewriting it as a book back in 2018 about what it's like to receive a diagnosis. You know that you're an asymptomatic person with ALS, basically, and the stories are organized somewhat chronologically about, you know, like what it's like to be the caregiver of someone with cancer, what it's like to be the caregiver of somebody who's having behavioral issues, what, what's it like being the daughter of somebody with ALS and like all these things going forward, and it basically it just tracks those years between 2018 and 2023, where I was just sort of becoming who I am now, like I I was an ALS warrior and now I'm an ALS warrior and that's kind of like that's a big difference for me, because for a really long time I was worried about everybody in my life and it never occurred to me to worry about myself or to care for myself, and so I think that this is.
Speaker 2:It's a story that speaks to a lot of people in the sort of sandwich generation, where they're taking care of parents who are passing away and bringing up children.
Speaker 2:And you know, I think that it speaks to a lot of people, because a lot of people who are in their 50sies or forties are in the same situation. Um, it might not be as dramatic as mine was, but, um, you know, there there is a certain amount of grace and love of yourself that is required to not worry about the next 10 years, you know, to sort of like surrender to the fact that the truth is the truth and science is science and it's not ready for us. So that kind of activism, it has to come from somewhere and it comes from the patient population. And so, you know, it took me a while to realize that I'm a patient. You know, I have been in conversation with the FDA and the NIH and they didn't even consider pre-symptomatic gene carriers to be patients, which is ridiculous, because we go through the same testing as all the patients do and we go through the same stresses, but we don't have the physical manifestations of the disease yet.
Speaker 2:And so, yeah, it's been a real journey for me, this learning experience of you know what does life mean and what does a good life mean, and you know how do I live with ALS and FTD, potentially in my future, and it ends up really being a story of resilience and about hope, and it's not at all like the trauma memoir that you would think it would be yeah, yeah, I wouldn't imagine anyone illustrating people no matter what they're going through.
Speaker 1:I mean, simply, how to focus on what you can control and to get the most out of the situation that you are in at that moment. Is that right?
Speaker 2:it's that, but it's also like to really love yourself. You have to love the imperfections of yourself too. So, like for you, lori, to be an activist like you're a better activist as somebody with ALS than you would be if you did not have ALS and that part of your world and your body and your soul you have to love that in order to put yourself out there. All the time on this podcast it's the same way for me, like I love myself, but I also love the als ftd part of myself, because I know that that's what makes me human, because we all have an expiration date. We're like a dozen eggs, right? Everyone?
Speaker 1:has an expiration date yeah it's just that and everyone has something you know, whether it's als or ftd, I mean, everyone has something that you think is less than and shouldn't hold you back. Yeah, otherwise we would all be. We would all be in the same stalling position. Um right, yeah, oh, how are you doing right now? How are you balancing living every day in the present while you have so much uncertainty in the future?
Speaker 2:well, I think that's the idea is like, because the future is uncertain, you have to be in the present, you know, and like. For me it means just doing things all the way, like don't have to do things.
Speaker 2:You know, if I have the opportunity to speak at an event, I'm going to do it because I can, you know, and if somebody offers me the opportunity to write a piece a snarky piece about agents or whatever, like I'm, I'm a better writer because I can throw myself a hundred percent into writing, because every time I snuggle my pets, I'm there with them like 100%, and people get my attention in a way that they didn't used to get. I mean, I'm a better friend as a result of this, I'm a better lover as a result of this, I'm a better parent as a result of this and I'm a better child as a result of this. And so I think that it is. It isn't just making do with what I have, it's being a better person for having this situation, and I feel like it's a gift. I really do, and being able to come to that realization this early in the game makes it that much sweeter for me.
Speaker 1:Yeah, that's true. That's true. Yeah, You've mentioned in the legacy. So how can listeners support that organization? You know who's invited to listen in and be a part of that?
Speaker 2:Well, generally speaking, we are sort of geared toward people with genetic forms of ALS and FTD, that said, also caregivers of people with genetic forms of ALS and FTD, friends of genetic forms of ALS and FTD, friends of fill in the blank. You know, I think that I can't really count the number of times that my dad has shown up on this on these calls.
Speaker 2:And so, like he comes to visit from Chicago I'm from Chicago Originally he comes to California to visit and I'll have like an end the legacy meeting and he'll just sit here next to me and just listen in. And you know, he doesn't have genetic FTD in his family or genetic ALS in his family at all, because my mom was the carrier Right, but so, yeah, we have. And then we have doctors and researchers on our calls all the time and we have motivational speakers and we do webinars, and so it's. If you're interested, it's wwwendthelegacyorg. It's pretty easy to find us.
Speaker 1:Yeah, and I'm on the website right now, so and it looks like you can click on about and get the backstory and find the leadership team, and then there's a tab to click on to get newsletters, and I assume I'm not finding it right away, but assume somewhere to sign up to get the newsletter.
Speaker 2:Yes, you can do that too on the website. You can also make a donation.
Speaker 1:Yes, you can do that too on the website. You can also make a donation. So you know you can click around and have at it, and you know it's very exciting. We're about to have our second summit, so we're kind of brand new, but it, oh my gosh. Yeah, you have a lot on here, and if you scroll to the bottom of any page, click on whatever social media outlet that you follow to get connected with you there as well. So, okay, great, thank you for that. So, mindy, this has been great. Before I let you go, I just want to ask you what are you dying to tell us?
Speaker 2:What are you dying to tell us? I am dying to tell you that when the chips are down and it looks like there's no hope at all, that is the time to love the world harder.
Speaker 1:Yeah, thank you so much for being here, and thank you.
Speaker 2:Thank you so much for having me.
Speaker 1:Yeah, okay, and thank you. Thank you so much for having me. Yeah, okay, and then let's stay connected. Um, you know, on your book, when it comes out on your book tour, I'm super excited to read it and, you know, best of luck to you always and thanks for putting your heart and soul into this community and helping other people who are in your exact situation or, you know, just dealing with ALS already or anything else. So really appreciate you.
Speaker 2:Thank you so much for having me, Lori.