The Courage of a Mother, Cindy Parseghian

The Courage of a Mother, with Cindy Parseghian

Cindy Parseghian is actively shaping the future. In 1994, she and her husband Mike founded a foundation dedicated to finding a cure for Niemann-Pick disease type C (NP-C), a genetic, cholesterol storage disorder that claimed the lives of three of their four children. The foundation joined forces with the University of Notre Dame in 2015, and together they fight daily to end this devastating disease. The Parseghian family was blessed with four children: Ara, Michael, Marcia, and Christa. Sadly, only the eldest, Ara, tested negative for the genetic disease. The diagnosis and subsequent loss of her three children brought Cindy indescribable pain, challenged her faith, and altered her life's trajectory. Just two months after receiving the diagnosis, Cindy established the Ara Parseghian Medical Research Foundation. Since then, millions of dollars have been raised each year, fueling significant progress towards eradicating a disease that can affect the brain, nerves, liver, spleen, bone marrow and sometimes the lungs. Symptoms can hit children in a variety of debilitating ways, including losing the ability to walk, vision, hearing and speech loss, and repeated infections. Far too many young lives have ended too soon.

But story is evolving. The foundation's work is now funding revolutionary research and providing hope to future parents who may face similar challenges. Recently, the FDA approved two therapies for NP-C patients which sometimes can take place over 5 -10 years as part of the drug trials. These children/patients are able to maintain their quality of life and appear to be living longer. In addition, more young adults are being diagnosed in their early 20s usually after experiencing some form of psychosis (they have a different genetic mutation that is associated with a late on-set form of NP-C.) All of these factors are adding up to a longer life span for NP-C patients and better news for families.

Cindy's response to her tragedy is profoundly inspiring. She found purpose and strength amid intense grief and launched a foundation with a dedicated mission to help others, while always keeping her children's memories close to her heart. As you will hear in this warm and enlightening podcast conversation with Bill, Cindy expresses immense gratitude for everyone who has contributed to the cause and become part of the team to end NP-C. We encourage you to learn more about the foundation, the benefits of the research, and consider making a tax-deductible contribution. Please go to https://parseghianfund.nd.edu 

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Transcript

0:11

Well, hello With Gratitude, Matt. Listeners. It's Phil Moran, Matt's older brother. And I'm your host today of the With Gratitude Matt episode. Our goal always remains to inspire more people to practice gratitude on a regular basis. Matt showed us the way when he embraced gratitude. This led to a life of deeper love and faith. Please know that Matt, his wife Mary, their two girls, and the entire Moran family appreciate all your love, prayers, support, and generosity. Today we hope that you draw inspiration from our guest as she shares her journey with us. I'm humbled and honored to be here today with our guests. Cindy. Past June, Cindy was introduced to me by our dear friends Paul and Vivian Zeff. Cindy and her husband, Mike are both Notre Dame graduates. Professionally, Mike is an orthopedic surgeon in Tucson. Cindy earned her MBA at Kellogg, and in her business life, she served as controller, CFO, and ultimately president of M, C s Telecommunication Lines in Tucson. Cindy and Mike started their family with four children Ara, Michael, Marci, and Krista. Three of their four children were diagnosed with a rare and fatal genetic disorder, Neiman Pick, type C disease. Mike and Cindy selflessly started the Ara Precision Medical Research Foundation. After these unthinkable diagnosis, their goal was to help families embrace the challenges, live with the disease, and to find a cure for Neiman. Pick type C disease. As the foundation's president, Cindy has helped raise tens of millions of dollars for research and to help others. Cindy has been recognized by many for her tireless efforts and drive to help those families burdened with this diagnosis. Specifically, in 2017, she earned the prestigious Saw an award from the Notre Dame Alumni Association. She was also recognized and earned an honorary degree from the University of Notre Dame, and has served on the school's board of trustees. Cindy. Sorry for the long winded introduction. We could go on, but you've accomplished so much. But thanks for joining us today. Well, Bill, it's it's an honor to be with you today. And, you know, you make me sound pretty darn good, but it's the people behind us, that has supported this and held this up along the way. That really made a difference. You certainly lived it. And, if you've done it, it's not bragging. So, thanks for being here. Kind of usually, you know, way we start is kind of just kind of start from the beginning and, you know, where you grew up. And tell us a little bit about your childhood. Sure. I, grew up in western Colorado, in a small town called Grand Junction, and it's about two hours from Aspen or Vail to give people that, you know, little reference there. And, I guess the biggest thing that happened in my childhood was my dad died when I was ten. I had a brother and a sister who were older, and so I didn't realize until just a couple of years ago it hit me that I was raised in a single family household. And it's a testament to the love and time and effort that my mom spent in raising us kids. I went off to Notre Dame kind of out on a whim. I really wanted to go to college in Boston, and I was accepted to several colleges and universities in the Boston area. My mom, when I was accepted, she looked at me and said, your dad would have been so proud. He was a real subway alumnus at Notre Dame. And that's why I went off to Notre Dame. And so, you know that that's that was my trajectory. People go, how did you get from western small town Colorado to Notre Dame? Oh, that's that's the story. And what a tribute to your father and his, drive and the dreams that he had for you. And that you continued and lived those out. So while at Notre Dame, what did you study and what major did you pursue? Besides life, you? Me? You know, I think that's half the reason to go to college, right, is just to get that experience. But, I majored in accounting. And then, I, earned my CPA, worked three years in Chicago to earn my CPA. And then, as you said, I went back to northwestern and got my MBA in finance and management information systems. From there, let's let's let's back up just a minute. So I met my husband to be, Mike, after the first weekend, the first home pep rally. Our junior year. And we started dating right after that. We got married shortly after we graduated, and Mike was accepted to medical school, and I knew I needed to work for a couple of years. So we went off to Chicago and it was a experience in Chicago, I have to say. You know, it was four years of trying to figure out how you're not going to eat in the dining hall anymore, that you actually have to figure out your own gender. And then when Mike started looking for residency, he came out here to Tucson, Arizona, and he fell in love with the community. And so we came out here, thinking that we would, stay five years and then move someplace else. But we fell in love with Tucson. And I'll tell you, this community has played a big role in our family. So once we got out here, we started talking about starting a family. And as you mentioned, our oldest son was Ara, followed shortly by Michael, Marcia and Krista. And so those were really good, happy years. And the children were all born perfectly healthy. And it wasn't until Michael got to be about school age that he started showing delays in his, development. He couldn't quite keep up with the other kids on the playground. His speech had become slow. His handwriting was just atrocious. And I can remember talking with in Saint Michael, when I look at you, you need to look me in the eye. I thought he was being a distracted five year old, not understanding that he was having difficulty moving his eyes. And so that's what led us on the journey to find out what was wrong. Wow. So your husband Mike is in his orthopedic practice, but through that, were you able to use, some of his relationships that he has formed professionally to try to get your son Michael in, to see the specialists that might be able to help him? You know, it was interesting because we absolutely have wonderful, incredible, connections in the Tucson community. And, it it does have major resources here. We have a great university here. But it still took us two years and we went to all kinds of specialists. My first pediatrician, kind of who paid me, thought I was being, an over zealous doctors wife. But after the first time you'd see Michael, when we were concerned, my husband and I talk about it, we said, no, there's something going on. We need to pursue this. And so we changed pediatricians. So we went to different specialists. And finally, Michael was tested for another rare disease, that required a painful biopsy in his CI. And it came back negative. And we were absolutely so frustrated. After two years of searching for an answer, we said, we want to go where the specialists are, that disease. And it happened to be Columbia University. And we got out there and you know, our or Michael's files were, you know, seven inches deep by then, because he'd had so many tests and, and evaluations, that the researchers and the doctors at Columbia University took a five minute look at Michael and said, we think it's Newman pick type C. And I said, why's that? And they said, be cut for two reasons. One is he having a large flame. And he had this eye movement problem. And the eye movement problem is, is something that's pretty indicative of type C children lose their ability to, move their eyes left and right and up and down, as the disease progresses. So we brought Michael back to Tucson and had him tested for the disease, which required a skin biopsy, and a spinal tap. And it showed that he had a storage disorder and most likely Nieman Pit. So we had our other three children tested, and much to our just believe, our two girls also showed up positive with the disorder. Wow. At this point, just to kind of give, you know, the listeners the lay of the landscape with regards to research and, resources for you as a parent, what was available for, people who had a loved one diagnosed with pick type C. 30 years ago? There wasn't much bill. First of all, and this is really going to age me. The internet was just getting going. Okay? So you couldn't even talk to have families. The way we got in touch with families was through the National Institutes of Health. There's a great pediatrician there that saw most of the children, and that's where a lot of children ends up if they got a rare disease. And so he would connect them to us and to our foundation. And what happened with the starting the foundation was, our first thought as parents was, we're going to take the kids out of school and we're going to show them the world quickly realized that's not what the children wanted. They wanted to be with their peers. They wanted to be with their friends. They wanted to have a normal experience. So we started talking about setting up a medical research foundation because they that's the only way we thought that we had a chance to impact their lives. And so we started out about six weeks after the children were diagnosed. And, it's been a journey. It has been just an incredible journey. Well. A research foundation. You don't just get out of bed and put an action plan together. I mean, where do you go to start that whole process and what kind of pillars are in place to do it? You know, I tell people that we had a lot of bad luck in having three of our four children, the way the genetics, and the, statistics go along with where the gene is and all that. We should have had one of our four children diagnosed with the disease, not three. But we had a lot of luck on the other side. My husband, who's as you mentioned, was an orthopedic surgeon. His best friend from medical school was a research cardiologist. At the time is at the University of Chicago, and he was able to put a scientific advisory board together. That is top notch to this day. And we all recognize, even though Mike will say he had the medical background, but he didn't have the research background to really, drive the research. And so, I mean, we have three Howard Hughes Institutes, on there and connections to Francis Collins, who was at the NIH. So it was a really strong scientific advisory board. And then I had the business background to put the actual business together. And I think that's people don't always recognize that when they they have a great idea for foundation, but they need to have the business side of it, too, or it's been a fail. And then third, and just as importantly, my father in law, er, a person who highly respected, honorable man, he could give us the national exposure that we desperately needed to really jump start the foundation and keep it going. Right. And then I also I one more time a lot of fourth to that. So I mentioned that we were in Tucson, Arizona and we had this core of volunteers that came forth and said, we want to help. We want to make a difference. And so you know, there's a quote by Anna Quinlan that said, we are defined by whom we have lost, and there's a lot of wisdom in that. But I like to think that we're also defined by those who have graced our lives. And we have just had an army of volunteers, throughout the 30 years that really made this happen. Wow. Well, I mean, I know that the entire medical community and all those families that are dealing with this very, very challenging diagnosis, thank you. Because what you have done is you've made their lives, at least, more, bearable and definitely. And, and, I mean, I guess, you know, when we talked, away from this conversation here, you mentioned that there's been a lot of advancements and I guess, you know, kind of for the benefits of the listeners, where are you and where are the medical team with regards to, advancements in the area of research and development? When we started, there were about two researchers in the country working on this disorder and not full time. And so we brought them to Tucson, for a meeting with our seven members of our scientific advisory board. And from that meeting, the they beat the scientific advisory board said, the first thing we got to do is we've got to isolate the gene. And that was really novel back. And that was before, Francis Collins led the Human Genome Project. And as luck would have it, several of the individuals on the SAB had genetic skills and helped direct that. And so we got that in somewhat record time. It was in March of 97 that we actually isolated the gene. And so we move forward from that. And so little was known about the disease that we've now field in a lot of the blank space. We will have all of our sciences and our scientific advisory board and some families with us here in Tucson in about six weeks, and we're expecting 170 Fort. So it's grown from two researchers to over 100 labs in the world are now working on this. So it's grown just exponentially. And some of the advancements haven't been limited to Neiman Pick type C, right? I mean, you've you've been able and I guess the for the listeners, I mean, you know, we might some might think not not me, but some might think, wow, okay, I get it. But there are other ailments, other diseases, other, you know, terminal illnesses that that may need funding as well. But you explained really and it was a beautiful story about how you've the research has been able to help those, in other areas. You know, and it first of all, I don't think IRA mentioned it's a cholesterol storage disorder. So cholesterol gets trapped in every cell in the body. And we see the real deterioration is in the neurological system. And as the disease progresses, children lose their ability to walk, to talk. Humans are very, seizures are very common, and most children die before adulthood. It's oftentimes referred to as childhood dementia. So you think about cholesterol and you think about Alzheimer's and dementia. And we know that our research will have an impact on that. One other that is is fascinating is it's been shown, that the gene that's responsible for NPC, it carries things in and out of cells. It's a transport mechanism. And one of the things that will not carry into a cell if it's defective is Ebola. Okay. So in theory children with with limited pick can't get Ebola. So there's a lot of research going on right now in our gene. And we've mapped out the entire pathway. See if they can use that as a method of of preventing Ebola. And it goes on. And I always like to people say, why should we support rare disease research? And people don't realize, first of all, I think how many people it impacts. It's estimated that one in, ten out every ten people is impacted with a rare disease. And it might be something as serious as Neiman pick, and it might be, you know, something that's milder skin disorder. But we're all impacted. And I like to, to talk about these two men that were down in Texas, UT southwestern doctors, Brown and Goldstein. And this was back, I think, in the late 70s, and they were researching a rare disease with children that children had cholesterol levels in the thousands and were having, heart attacks at five and six years old. And so the doctors, Brown and Goldstein, mapped out at that time, was thought to be the only way we metabolize our cholesterol. And their work led to statins, which are probably the most prescribed drug in the United States. And those two gentlemen won the Nobel Prize for their work in this rare disease. So when we came along with our gene and said, hey, we've got a whole nother way that we metabolize cholesterol, blaming the lab. Their labs down at UT southwestern have been working diligently on this now for the last 30 years. So one of the things in we talked briefly about it, but and I read a little bit about it. And what was the implementation of newborn screenings? Is that something that kind of is, broken out from all of this research? Yes. And I think it's a really important, critical tool that we need to have, so that we can diagnose those children very early on. And we have a screen that was developed at Washu and Saint Louis, and we are currently validate in that screen at nine hospitals in New York with 150,000 live births. So we hoping to have that done within the next 2 to 3 years. And I, I'm going to get into our science a little bit. We have now two therapies that were approved by the FDA in September of 24. So just recently, but it was a real, a watermark is that for us, as a foundation consists of the first two rods or therapies develops for even type seed. We are now working on a small molecule program. That will be and it's going incredibly well, unbelievably well right now. And if it continues to look like it does now, this will be closer to a cure. So it will take us about another year to get it into animal trials and then 2 to 3 years in children. But we're hoping that we will have the, small molecule, perfected at the same time we have the newborn screen so that we can identify these children at birth before the cholesterol starts, building up. And then they'll have a pretty much normal childhood. Wow. That's incredible. I mean, what what you've been able to do, and and I know it's, you say 30 years, but in the medical world that's moving pretty quickly. It seems like. Or so where where does that, you know, where do you go from here? As far as you know, obviously. Are they in clinical trials then or you said nine hospitals. So, when children are born, they are usually given a meal prep and taken a couple of drops of blood, and it's a dried blood spot. And then they test it for various diseases. I think one that comes to mind is Tay-Sachs. And there's some others. And so before we can get on those screens, which are not standard throughout the United States, you have to basically go to every state to get it approved. We have to verify that the screen actually works, and that's why we have to do it with so many babies. And, so it requires right now a geneticist to go in and talk to every mother, that just had a baby to see. Are you willing to participate in this basically just trial to see if we can get this screen approved. So, it's an undertaking. We think that that the, the, the, advance in the small molecule is really exciting for all of us. It's what we've been looking for, and it's, you know, sometimes I just can't figure out why somebody comes into our lives when they do, but, the head of fundraising at Notre Dame got a, call out of the blue from a billionaire in New York and said, I understand you're, joined human research. And Lou said, yes, we are. And he said, well, his brother had died from back in his 20s, and he wanted to to, advance a small risk, high reward program. So that's what we've been doing is right now it's been released. And I guess that kind of leads a little bit, you know, you know, a nice segue there. Now, the, foundation is, affiliated with the University of Notre Dame and and kind of when did that all come about? And what does that mean moving forward? So it started about about a decade ago, the dean of the College of Science at Notre Dame decided that he wanted to help our fundraising efforts by riding his bike across country. So he would take a month off during the summer, and he'd get up at 430 in the morning and ride 100 miles, and then he'd go and do his work for the day. And I got to know him, and I go around and, and and, around the country with him. And we would stop at Notre Dame clubs. We would meet human families. And that kind of started our little engagement with Notre Dame. And then it just became apparent that it was was important for us as a family to make sure that we had a place. Right. In case, you know, I'm 70 now. So was my husband that we wanted to make sure that we had a place with his guitar. And I'll say Notre Dame opened their arms to us and they give free space, free legal advice, free marketing. They have an event going on right now that will benefit us. And so they had just been so gracious in the support of our family and our foundation. That's great. And I'm glad you you found a wonderful partner. I guess, is the right word with, with the with all the work that you've done, I'm sure they're grateful to be a part of it as well. So kind of kind of shifting gears a little bit and, you know, you you mentioned in you were very kind to mention a lot of the, the supporters, the medical professionals, the doctors, the business people. You mentioned the generous donor, recently that came to light. But you've seen a lot of you've seen a lot, Cindy, and what are some of the lessons that, you know, maybe you've learned and maybe you've seen kind acts of others and you know, some of the things, but specifically to like Marcy, to Michael and to Krista. What what did you see and what did you learn? You know what what I think I saw is that people show up, okay? And and not to just be part of a, you know, a trend. They do it because they care. And, my children's friends taught me so many lessons about how to truly be there for somebody else. And, and I like to, to give the example of my daughter Marsha, who was the last one who died, and she died at 16.5, and she, when she first started in kindergarten, she developed a friendship with a young lady by the name of Perry and Perry. Marsha just became inseparable. And at the time, where she wasn't showing symptoms. But as the disease started settling in and she started slowing down here, his love for her never waned. And so, I mean, I can remember she would come over and make sure that I got her dressed appropriately for grade school and then middle school and then high school, and that she wasn't, you know, fashion wise, out of sync with everybody else. And then Marsha died in August, but three months before they had prom, and Perry and another group of individuals decided they were going to take Marsha to prom. Okay. And they called me up. They said, we want to take her out for dinner, too, right? And so they said, Marcy is a who was always with her because she had a feeding tube, was sit in the back of a restaurant and they would feed Marsha. Okay. So they did that. Then they took her to the prom, and I'm sure they danced to the Backstreet Boys and in sync and Britney Spears. Right. And then then they brought her home. She had the biggest smile on her face. Okay. And then three months later, she just, got a really bad bout of pneumonia and just spiraled down, and Perry and and two other friends were with us. But you know what, though? It didn't end there. So Perry, moved back to Tucson about five years ago, and she had a baby that's a little over a year old now. And she named her, Charlotte. Marsha. So she keeps her, you know, her, her, her. We're still with her at all times. And I couldn't repeat that story. Not only from the children, but from our own friendships. And that's just been so rewarding. And I always say everyone should try to find that in life. Not the way we did, but, you know, it's just looking at the people around you and understanding the impact that they have is pretty remarkable. Thanks for sharing that. And thank you for Perry for just being a good friend and being just being a true friend. You know, one of the things that I always have to, you know, be respectful and mindful of is, you know, and and you were so touching when we first chatted. You said, tell me about Matt. And I was just really humbled to be asked that question because, you know, a lot of people maybe shy away from it, but you were very gracious in telling me about your family and I guess for the listeners who have gone through heartache and and there's no other word for it. Cindy, tragedy. What does it mean to you for them to ask about, your children? It touches my heart. It touches my soul, and it. And it keeps them alive. It keeps the memory of Michael, Marcia and Christa alive. And we had really good times, Bill. Like, we're where I'm sitting right now in our house right after the kids die. A lot of our friends said, are you going to move? And we go, no, we're going to we we have good memories in this house. And so I, I love talking about my children and I'm sure tons you feel it might be awkward to talk about Matt, but he's part of your heart and soul, right. And so when anybody asks me about them, it puts a smile on my face. You know, that's great. And I, I really just, applaud you for sharing that. And, you know, one of the things that my brother always reminded us was to, was to be present. And, boy, what a living example you are of of that in all of the beautiful, stories that that you've created because of the research and the develop it that you've done in this area, all the lives that you've affected so positively. So a couple things, you know, this is more a bit of housekeeping, but how can our listeners help? How can, how can they help, this research foundation and where can they, and we'll we'll include the link on our show notes. But but how can we help Cindy? Well, you know, oftentimes the easiest is to open up your pocketbooks, right? And we don't shy away from the fact that we are a fundraiser, an organization. Otherwise, we cannot support the research. And so and that you can put it up for this position, but indeed, you and the other way is just to, familiar size yourself with rare diseases and the impact it has, on communities, on families, all around the world. You know, one thing we found out about Neiman Pick is that it affects every culture, every country. It does not shy away. It does not have boundaries. And so I think that that that's a way that you can help a lot of other people by just becoming more informed about rare diseases. Thank you for sharing that. And I if I didn't want to know, I wouldn't have asked. But but you know and I'm, glad that you were you made that ask and I, I hope the listeners will follow up and support generously. There's wonderful efforts. You know, I think you asked me about the kids. And can I tell you a little bit about the kids? I really want to know. Yeah. So I, you know, I want to say so we had Michael and he was he loved costumes, okay. And he loved karate and he loved, horses. I think he he he wore out a pair of cowboy boots before he outgrew them, which is hard to do when you're five years old. They. But he was our cowboy and just just appraiser to boot. And then Marsha, loved to dance. And she danced up until she went to dance lessons up until about two weeks before she died. And her dance instructor said as long as she wants to dance, we're going to make it happen. And so we had some teenagers that would go with Marsha, and she would be in your wheelchair, and she'd point her toes and they'd spin the wheelchair around. And so she was our wheelchair bound ballerina. And then Christa just loved The Color of purple, which I did not know until her death. And I asked the, priest if he would wear purple vestments because, you know, if we went to the grocery store, Christa wanted purple daisies. If I was handing out Jelly Bean, she wanted a purple jelly bean. Or if it was popsicle sticks. It was a great. And he said, Cindy, I can't wear purple because she died in October. And it wasn't the time leading up to Easter. But he talked about her love of the Color Purple, and I did not know that even though I was raised from, you know, from birth, to be Catholic. That hope that purple is the color of hope in the Catholic tradition, so that we use a lot of purple in our, our, promotional work for the foundation. So don't be surprised the next time you see me, like. Well, and I had read that in one of the many stories that were so moving, but I you probably can't tell, but there's a hint of lavender in here. I don't know if I'd call it, full on purple. But yeah, definitely some lavender. And I remember, that about reading about about Christa. So. No, that's I mean, what an amazing family and and, era. Your son is a physician, and he's happily married and kind of tell us about him and what he's been able to accomplish with his family and his wife. And, I believe their two young children. Well, here is my hero. Absolutely my hero. Here. He lost his three siblings by the time I think he was 20. Michael died when he was, er, was 13. And that young gentleman had to grow up pretty darn fast. And yet he has, He has a an attitude that is not morose. He's very funny. He's a physician. He deals a lot with, ob. I said he's nasty, y'all. Just about 80% of his practice is dealing with pregnant women getting in birth. And so I think he loves watching that whole process. And we just feel so blessed that they're back here in town. They were on the East Coast groups and seniors, we actually told him. He told us, he said, mom, I cannot go to Notre Dame. He goes, everybody knows my life story. And not only was he named after his grandfather era, but, he said everybody knows the story about his three siblings. And so he went off to Princeton, not not to go to shabby school. And then did really well. And so but we were just thrilled when they, when they all came home, they live about five minutes away from us. And he calls every day and, and it's it's a blessing to have them with us. That's great. And, and, you have grandchildren. Have to we have Layla, who's 11.5, and then they just turned nine on Easter. It's keeping us young, keeping mission. That's great. One of the things that, you know, and and send me, I mean, this is probably tough to boil down, but, you know, a lot of our listeners, are they, you know, they have, children, family members that have been really given some tough diagnosis and tough hands dealt them. And, what what advice do you have to them on the day to day and what might help them on their journeys? Two things. And the first might sound like selfish or egotistical, but as a caregiver, if you don't take care of yourself, you can't take care of the people around you. And a really good, dear friend, imparted that wisdom. And and I learned that even if it was just taking a 15 minute walk, I needed to do something just clear myself so I could be present to the children. And then the other thing is, I would. I would say, don't be afraid to say I need help. I can't do this alone. People want to help. They just don't always know how. And so if you if you express the fact that I need help in this life, people are just incredibly generous with their time and efforts. So those are my two words of advice. That's that's great. You know, that's good advice. And and it sounds like you've taken your own advice and, and lived it, for sure. So we were talking earlier and, you know, tell us a little bit about your faith journey through all of this. You know, that that that's that's it has been a journey, a faith journey. Because as you can imagine, when my children were first diagnosed, I curse God. I just could not believe it was happening and how that could happen. And so, you know, after after cursing God by name, I, started with a prayer that said, please cure my children, heal my children. And then it morphed into, please don't let my children suffer. And then begging him to love my children and then to bring me peace. And now, I guess, to, you know, asking for peace. I have added something that a good friend, shared with me. And it's a prayer that goes, Lord, lead me today to those I need, to the ones who need me and let something I do have everlasting significance. And you know, I'd like to say that I have. It was my morning coffee, but it's usually it was my last glass of wine at night. But I do try to keep that close to me. Wow, that's a special prayer and so meaningful. And thanks for sharing that. Before we went on the air, we noticed a beautiful piece of art in the background, and it kind of described that. And what is the meaning of that? And what does it symbolize for you and your family? Well, you know, it's a it's an interesting a man here in Tucson made it for us. And it's a collage made out of books. And so I took a bunch of our family books to this gentleman, and he cut them up and then put them back together. And first purple, as I just told you about the love of the Color Purple, and that's, you know, pretty prominent in there. But if you look closer to that, especially to the, the purple flowers is you'll see books. There are two books from each of my children that you can see parts of the pages. You can see pictures from the books. You can see, like my one daughter, Krista. Her favorite book was. Yes. And you know, if, if, frogs ate rainbows, and things like that. And so, so you can see that in there and then, in the green, in the stems, is bits and pieces of the Notre Dame yearbook from our graduating class of 1977. And the gentleman who made this took the time and effort to go through and find my photo and my husband's photos and some of our friends and father Habsburg and some other the gold. So that's up in there, too. And then the gold that you see around there is from a Webster's, Merriam Webster's dictionary that we used to have a game with the kids, and we'd open it up randomly and ask them if they knew a word. And so that was just something that we shared together. And so that that while that looks like an interesting collection of of collage of two lots, it's really has stayed meaning to our family. And one thing else is it's in there is Amy Grant, the singer songwriter writer, has become a really close, dear friend. I asked her a cold call letter. Said Amy, would you come out, perform an event here in Tucson? She didn't know us from Adam, and she said yes. So this was 28 years ago. And after she performed, she said, what can I do to help? And she's never left our side, so she dedicated one of her famous songs, breath of Heaven. She made it into a book. And that's up in that lodge, too. So it's parts of our lives, our friends, our family, our memories. Wow, that is so special. I'm so glad that you were able to share that. And it's also a beautiful piece of art, too. So meaning so powerful. So, Cindy, I can't thank you enough for for being with us here today. I mean, you've really inspired me and I know you're going to inspire our listeners to, support, the Research Foundation. We shared the link, will share it in the show notes. Of course. As we come to a close of our portion of the episode and any other final thoughts or words that you would want to share? Well, Bill, I think that, I want to thank you, for taking on the mantle that your brother started, for reaching out to pure strangers to hear their stories. I think that's how we all become interconnect is by sharing our stories. Right? And that's how we learn and grow from. So thank you for what you're doing. Your brother would be really proud of you. Well, it's, it's I mean, it means the world to me. Cindy, our last guest, he had a phrase, and I kind of borrow it. Every life has a story, and every story has a lesson. And I think that this. You're living example of that, too. So. And so are your, all of your children, your entire family. So, Thank you. I do have a special announcement. We're going to shift gears here further with gratitude mat listeners on August the 8th. This summer, we are going to have a celebration of gratitude food. It's going to be at the transept in Cincinnati. This will give the family and friends an opportunity to be together, celebrate gratitude, and, just have some fun and raise a little bit of money for the With Gratitude Mat Foundation. So, you know, listeners, please keep an eye out and ear out for an invitation. Just be sure to check our website for an opportunity to join in, the fun. And also, if you are so inclined to be a sponsor, we greatly appreciate it. So as we close our show today, I encourage you, listeners, to go to the air passage and, research Foundation website. Percy John Fund, dot and.edu to learn more about Cindy and the amazing work of the Foundation and to support their efforts to help others. We'll share that specific link in the show notes. As we close here. Matt always reminded us to do three things daily. One was to find something to be grateful for, regardless of how powerful the storm is. The second was truly be present with those you're with, and the third was pay attention to what you're feeding your mind, your body, and your soul. Again, a huge thank you to our guest, Cindy Precision. To our listeners. Remember to subscribe to the show, share it with friends and comment with gratitude. Matt. Listeners, until the next time, find the courage to be grateful. Godspeed my friends.