Best of Health Matters: Transformative donations to the MUHC Foundation

This week on a special edition of Health Matters, Tarah Schwartz revisits conversations about transformative donations and fundraising campaigns that are improving the health of our community every day. Uzema Jeena shares what it is like living with the blood disorder thalassemia major and how it inspired her to help other patients. Dr. Dao Nguyen details how a $500,000 donation from Rio Tinto will provide much-needed funding to researchers at the Antimicrobial Resistance Centre. And Darlene Hindley explains why her family is dedicated to supporting patients with genetic illnesses. 

Cette semaine, dans une édition spéciale de Questions de santé, Tarah Schwartz reprend des conversations sur des dons transformateurs et des campagnes de collecte de fonds qui améliorent la santé de notre communauté, tous les jours. Uzema Jeena partage ce que ça signifie d’être atteinte de thalassémie majeure, un trouble sanguin, et pourquoi ça l’a incitée à aider d’autres patients. La Dre Dao Nguyen explique comment un don de 500 000 $ de Rio Tinto va fournir un financement essentiel aux chercheurs du Centre de résistance antimicrobienne. Et Darlene Hindley raconte pourquoi sa famille est déterminée à soutenir les patients atteints de maladies génétiques.

Transcript

Tarah Schwartz: 0:00

Hello, I'm Tarah Schwartz and this is a Best of edition of Health Matters. On today's show, we share the stories behind the transformative donations and fundraising campaigns that are improving the health of our community every single day. Later in the show, we speak about a $500,000 donation from Rio-Tinto to the Antimicrobial Resistance Centre, and just how dangerous infectious diseases will be if antibiotics are no longer effective to prevent and treat them. But first we spoke with Uzema Jeena this summer about living with thalassemia major and her goal to help fundraise for a special piece of equipment called the Vein Viewer. The viewer is actually really fascinating. It illuminates veins from the outside of the body, so it's easier for health care professionals to locate the veins on patients, which sounds like a great thing. And for people like my next guest, it helps to have an easier time with blood tests and transfusions. Uzema Jeena has had over 700 blood transfusions in her life. She and two other women fundraised for and purchased the Vein Viewer, she joins me now. Hello, Uzema.

Uzema Jeena: 1:09

Hi, Tarah!

Tarah Schwartz: 1:10

So exciting to talk to you about this fascinating piece of equipment. But before we get to it, let's hear a little bit about your history. What is thalassemia major?

Uzema Jeena: 1:21

Thalassemia major is a severe anemia. It's an inherited blood disorder that causes my body to have less hemoglobin than normal. So I need to receive blood transfusions every three weeks to keep my hemoglobin stable enough to survive. I was diagnosed with a female major when I was a six-month old baby. And that's when I received my very first blood transfusion.

Tarah Schwartz: 1:43

Wow, that's incredible. And what are the symptoms? I don't know very much about anemia. But I know that there's fatigue associated with it. What are the symptoms of of thalassemia?

Uzema Jeena: 1:54

Yeah, well, my energy levels tend to fluctuate quite a bit. Basically coming up to the transfusion date, I start feeling weaker and weaker. And then when I do get the transfusion, it's always a shock to the system and it takes a lot of time to recover from that. So then it's another day or two before my energy levels get back up. But once I recover, I feel great and I'm able to be very active. But no matter how weak I feel, I always try to make the most of every single day because it's such a hard fight just to be alive.

Tarah Schwartz: 2:27

No kidding. So do you still have to go for transfusions every three weeks? And have you been doing that your entire life?

Uzema Jeena: 2:35

Yes, mostly. I was diagnosed when I was six months old. It was really from that time when I started receiving blood transfusions. And so for the first 20 years of my life, I was receiving blood transfusions every four weeks. But then after they found that I was starting to have bone pain because my hemoglobin was dipping too low. And it's not good to have your hemoglobin dip too low and then suddenly get a transfusion and then suddenly the hemoglobin is really high. It's better to keep it stable. And so then the health team decided to transfuse me every three weeks instead. So that make hemoglobin with stay more stable. So for the last 20 years, it's going to be three weeks. So I'm on an increase schedule right now. But it helps it definitely helps my energy level.

Tarah Schwartz: 3:29

I'm sure. And how long does that take? I mean, you've got to get to the hospital, how long does it take to go through the process of getting a blood transfusion?

Uzema Jeena: 3:39

Tarah, it can take anywhere between five and nine hours.

Tarah Schwartz: 3:42

Oh my goodness.

Uzema Jeena: 3:44

I know that that sounds like quite a lot. I usually get there in the morning and then after the nurses have to do a cross match. Basically, they have to take several vials of blood and send them up to the blood bank in order to do cross match with the donor blood just to make sure that I'm not going to get a reaction. And that whole process of the people at the blood bank, doing the cross match, that takes anywhere between 45 minutes or like three hours, depending on how busy they are that day. Then once I do finally receive the blood, I check it over with a nurse. I make sure that my name is correct, my patient number is correct, I'm receiving the right type of blood. And then they start receiving the blood but then each unit of blood takes about 2 -2.5 hours to receive. I usually receive two units of blood every time I go in.

Tarah Schwartz: 4:44

We're speaking with Uzema Jeena; we're talking about thalassemia major and we're going to be talking about a piece of equipment that she helped fundraise for. When you're talking about the blood that you're receiving, it's making the link in my head now that when people go and donate blood, you are somebody that they're going to be donating blood to.

Uzema Jeena: 5:02

Oh, yes, absolutely. Absolutely.

Tarah Schwartz: 5:04

And is this something that you're going to have to do for the rest of your life? Are there any changes to how you're going to be treated?

Uzema Jeena: 5:13

I am probably going to have to do this for the rest of my life. However, of course, there are always new breakthroughs and technology and treatments. I have to tell you that just during my life, there have been so many changes. For example, a generation like previous to mine- those kids who were born with thalassemia wouldn't even survive past the age of 12 or 13 years old.

Tarah Schwartz: 5:44

And, you are how old now?

Uzema Jeena: 5:47

I'm 47.

Tarah Schwartz: 5:48

Wow. You are an amazing example of what can be done. Wow!

Uzema Jeena: 5:55

Thank you so much!

Tarah Schwartz: 5:56

What do you tell people about the importance of donating blood, Uzema, considering? Because I don't think we often realize or hear from someone who would directly benefit from this kind of thing. What do you say to people?

Uzema Jeena: 6:08

To me, blood is such a precious gift. It's something that can only be given from one person to another. I'm alive today because of the generosity of others. I've been so lucky to benefit from this generosity since I was a baby. And I know that in anyone's lifetime, someone in anyone's circle may need blood because of an accident or an illness. And every day, every moment, there's someone out there who needs blood. It could be your sister, your child, your best friend, your aunt, your colleague. I've been saved by countless strangers, people I've never met over and over again. I'm just so grateful that there's such generous people out there.

Tarah Schwartz: 6:44

Oh, my goodness, Uzema, you're so touching. I feel like I want to run right out and give blood right. And I'm sure you're inspiring a lot of people to do the same. Wow, you're incredible. I want to talk about another incredible aspect of who you are, is that you decided with some a couple of other patients to fundraise for something called a Vein Viewer. And now that we've heard a little bit about your story, I think we understand like when you're getting that many needles in your life, being able to easily see your veins must make things easier.

Uzema Jeena: 7:16

Oh, yeah, definitely. Definitely. This Vein Viewer, I mean, it's definitely something that can help people living with thalassemia like me, who need to get blood transfusions every three to four weeks to survive. Because for me, my veins are my lifeline. But after so many transfusions over so many years, my veins are really scarred and sensitive. So getting a blood transfusion can sometimes be very painful because of that. There are times when I'm in tears, because I'm in so much pain there. There are days where the nurses take five, six tries to get my vein. I can see in their eyes that they hate inflicting that pain on me. But if a nurse can get my vein in one shot, it makes all the difference for both of us. And now that we have the Vein Viewer, we're hoping that this is going to help everybody at our clinic. Not only people living with thalassemia, but also the nurses and anyone who comes in for treatment.

Tarah Schwartz: 8:09

You were there the day that Vein Viewer was delivered and unveiled. What was that moment like for you to know that you were part of this?

Uzema Jeena: 8:18

That felt great, because it's been a really long road. Doing the fundraising and actually mobilizing that money to do something like this. It just felt great that we're able to do something so meaningful with the money we raised. And I'm so happy, we're able to buy this for a clinic on behalf of the Quebec Society of Thalassemia. I've always thought that it's so important that we take advantage of technology like this to make everyone's lives better. And we really wanted to do something to help both the patients and the nurses. And it's a really cool device as well. It's really, really cool, because actually seeing it in use. The nurse has to hold the Vein Viewer up over the patient's skin, about 30 centimeters away, and you can actually see veins that are a centimeter deep, which is really amazing. And you actually see that projected image on the patient's skin. It's really... the future is here.

Tarah Schwartz: 9:21

Oh, amazing. I'm so happy and I'm so proud of you. I don't know if that sounds weird, Uzema. But I just feel like you are such a wonderful positive optimistic person who gives back. It's been an absolute treat to speak with you. Thank you again so much for your time today and for making that effort to fundraise for the Vein Viewer.

Uzema Jeena: 9:38

Thank you so much, Tarah. It was great talking to

Tarah Schwartz: 9:40

Absolutely wonderful to speak to you. Thank you. you so much, Uzema. Uzema Jeena, who has been living with thalassemia major and fundraised for an important piece of equipment at the MUHC. Coming up, how researchers are working to combat a world where antibiotics are no longer effective. I'm Tarah Schwartz. Welcome back to a special Best Of edition of Health Matters, one of the priorities for the MUHC Foundation is to raise funds in support of experts working on antimicrobial resistance, which you may be surprised to learn is a growing global health threat. Every surgery would be affected, every cut would be more of a concern, because what would we do if antibiotics didn't work anymore, or worked far less efficiently. Many researchers at the MUHC and the Research Institute of the MUHC are working to avoid a future where antibiotics no longer work. Dr. Dao Nguyen is a clinician scientist and the Director of the McGill Antimicrobial Resistance Centre. Thank you so much for joining us, Dr. Nguyen.

Dr. Dao Nguyen: 10:41

Thank you, Tarah, for having me.

Tarah Schwartz: 10:44

So I would love you to take us on a bit of a timeline. Antibiotics were first discovered in the 1930s. How did that change everything?

Dr. Dao Nguyen: 10:53

It completely changed the face of medicine in the way where we deal with infectious diseases; particularly bacterial infection. So before the first antibiotic existed -penicillin- if you had a wound infection, this could lead to you losing a limb, you could die of bacterial pneumonia. With antibiotics now, not only could we cure severe bacterial infections, but it also made a lot of the modern medicine treatments; like surgery and chemotherapy safe, because if we couldn't control bacterial infection, it would be very dangerous, potentially life-threatening to have complications.

Tarah Schwartz: 11:38

So that was going on 90 years ago, if my very quick math is correct. So that has happened between the 1930s. And now? What sort of has evolved and changed?

Dr. Dao Nguyen: 11:52

It was really the Golden Era of antibiotic discovery when we look at the 40s and 50s, all the way until the 80s. Numerous antibiotics, everything that we have at the pharmacy now were discovered primarily through searching for natural compounds that nature already makes that were turned into drugs. That was really thought to be the end of bacterial infections. And the problem now is, the 80s, if you do the math was 40 years ago, and over the past 20 to 30 years, our discovery of antibiotics have plummeted. We haven't discovered and developed anything that's truly new. And so as resistance to antibiotics rises and nothing new is coming down the pipeline. This is where we're really facing a crisis.

Tarah Schwartz: 12:46

And why was there so much discovery in the first say, 50 years, and then the inability to discover something new. What changed there? Is it just there wasn't any more out there to create antibiotics with?

Dr. Dao Nguyen: 13:02

Nearly all of the antibiotics that we know are inspired by molecules that nature makes. Primarily other microbes, bacteria or fungi, that makes to compete against microbes. Sort of this chemical warfare that microbes do and we just co-opted those molecules and made them into drugs. During the first 50 years or so of antibiotic discovery, the government and companies went out there and looked for the next penicillin out in the soil, and they screened for microbes from the environment. And they found almost all of the things that they were able to successfully turn into drugs. Then the low-hanging fruits kind of dried up and companies then started to try to look for drugs the way more modern drug screening did, which was libraries of synthetic molecules. That unfortunately turned out to be very difficult. In fact, it hasn't really led to the discoveries that everybody was hoping for. So companies were able to find drugs to cure high blood pressure or to cure other human diseases. But for infections, it's just the microbes are different and all of that chemical know-how didn't work out and did not translate it to new discovery. So now we're really at this intersection of well, what do we do next? And unfortunately, because the drug companies have failed, they've kind of disinvested themselves from this drug discovery in the past few decades.

Tarah Schwartz: 14:42

I mean, I'm not sure if this is correct. But I've often heard that the fact that antibiotics no longer work is because we have used them too much. Is there truth to that, like, that's why they were saying, don't use antibiotics if, unless you absolutely have to. And otherwise, it's good, they're going to learn how to fight back. Is that what happened?

Dr. Dao Nguyen: 15:00

There is definitely a lot of truth to that. So microbes, bacteria become resistant. I mean, that's just part of nature and evolution, and it's out there. But it doesn't become a problem until those drug resistant bacteria become the dominant one. They can take over and they're selected for, as we say. So what drives these drug resistant bacteria to be more successful, if we're using a lot of antibiotics, either using them a lot in the hospital and patients. Or patients who are exposed to a lot of antibiotics, because you have a bronchitis and ear infection, and you didn't really need to; it changes the bacteria in your body. And it will select for anyone that might be more drug resistant. Also the use of antibiotics outside of humans-on farms, and it trickles down into the environment. That also changes and will be the microbes in the environment and in animals. And that will select for the rise of antimicrobial resistance.

Tarah Schwartz: 16:11

We're speaking with Dr. Dao Nguyen, and we're talking about antibiotic resistance and how researchers are working on finding solutions. Just before I move on, I'm fascinated by what you said about the environmental impact. So if farmers are using antibiotics on the animals, can you just talk a little bit more about how that will impact antibiotics for humans and moving forward.

Dr. Dao Nguyen: 16:33

I think that the first of all, the farmers are using a lot of antibiotics. And the concern is that as you use them in huge amounts, and you are exposing animals, you're exposing a soil to antibiotics, this will select for drug resistant bacteria to be more common in all of those places. So the food that you eat, potentially, or the soil that you are exposed to, or the water that you're exposed to. And so this means that we become surrounded by more and more drug resistant bacteria. Now, the link between what you're exposed to and when you get sick is one that is a little bit more tenuous. But you can imagine that you might catch an infection by being exposed to bacteria in contaminated water, for example. Or the bacteria on your body might be influenced by all of the microbes around you. So at that point, I think what is around us, is likely to then influence what we are infected by or what we carry on ourselves. And then when you become vulnerable, then those very bacteria are the ones that cause disease. And if you now are colonized or carry all of these drug resistant bacteria, and that's what is going to be problematic. Suddenly, our antibiotics will not be able to fight against the drug resistant bacteria anymore.

Tarah Schwartz: 18:05

Now the United Nations is calling this a global health concern that by 2030, we're going to be in dire situation. So I was going to say how big of a problem is it at this point? But I feel like I just sort of answered that question for myself. How big of a problem is this going to be Dr. Nguyen?

Dr. Dao Nguyen: 18:22

I think that the outlook for 20 or 30 years for now is pretty scary. And you've just quoted the numbers. And in fact, just like when you think about climate change, the predictions are based on numbers of what's going on. Now, while since those predictions that you just stated some of the newer numbers about what's going on now are in fact even more concerning than what was counted a few years ago. My concern is that it might be even more dire, if we don't do anything about it. And that's the real challenge that we are facing now is- what can we do now so that we're changing the course, changing that curve and we're not heading into even more drug resistant bacteria being the top killer, globally in 30 years.

Tarah Schwartz: 19:16

Alright, so you've heard about the problem. Dr. Dao Nguyen is going to stay with us. And we're going to talk about solutions. I'm Tarah Schwartz, welcome back to a special best of edition of Health Matters. We are back with Dr. Dao Nguyen. And we are talking about antibiotic resistance and how researchers are working to find solutions. Dr. Nguyen, we've heard all about the issues, the problems, the timeline where we are now. From what I understand, it's not about finding new better antibiotics to replace the ones that are being resistant, what is the goal with the research that you are working on?

Dr. Dao Nguyen: 19:54

There are multiple ways that we need to find solutions for. It's yes, we do need new antibiotics. And we need new alternatives to antibiotics. But as you mentioned, that's not just enough, we want to prevent that from happening in the first place. So we want ways in which we can diagnose bacterial infections more readily, so that we're sure to be using antibiotics at the right time. We want to know that we're using the correct one too. So better diagnostic tests to determine if the infection that you have is actually drug resistant or not. Because we don't want to use an antibiotic that is much more powerful than necessary. We also want to understand how these drug resistant bacteria move around. And can we prevent that from happening? How do they move around in the hospital? How do they move around in the environment so that you can prevent the transmission and catchings if you want to think about it that way, a drug resistant bacteria?

Tarah Schwartz: 21:04

Can you tell us about some exciting research or possibilities that you and your colleagues are working on that might help us to see where the future lies?

Dr. Dao Nguyen: 21:13

There's a lot of exciting research happening at the Research Institute of the MUHC as well as McGill. So I can think of a couple of examples. I have colleagues who are engineers who are ready to develop either a new materials or that are antibacterial. If you get a hip replacement, or if you have a foreign body that could get infected in post-surgery, these materials are much safer. So this is a way to prevent infection. Because we know that in the hospital, there's a lot of drug resistant bacteria. So really trying to make all of the surgical procedures, for example, much safer. I have colleagues who are trying to design the next diagnostic test. You know how COVID test now is a simple, almost like a pregnancy test you can do at home. It turns out that we don't have a lot of good diagnostic tests to adequately diagnose what bacteria do you have that causes a particular infection quickly. So that when you go to the doctor, they don't give you an antibiotic, just based on guesswork, but we would like to know that you really need that antibiotic, and it's the right one, and that this will prevent you from being inappropriately treated with antibiotics. Or perhaps if you're dealing with a drug resistant one, that you're getting the right antibiotic. I also have colleagues who are looking at comparing different antibiotics that already exist. Which ones are better than the other? Are we really using the best ones that we have in our current pharmacy? So there's also fundamental scientists who are trying to understand; for example, how some of our practices of our agriculture; using pesticides, is changing bacteria in the water, environment and are such chemicals, for example, increasing the risk of drug resistant bacteria from emerging from the water. Then you can imagine, where that water goes, this is where we would might be exposed to it. But this is how we're connected to this entire our entire external environment.

Tarah Schwartz: 23:42

Wow, those were three really interesting clear examples. Well done, Dr. Nguyen. That sounds so fascinating. We are speaking with Dr. Dao Nguyen, who is the Director of the McGill Antimicrobial Resistance Center. When you talk about these kinds of exciting projects, what tends to be the timeline for this kind of thing? Like when does it go from research to actually being able to be used in the hospital or in society?

Dr. Dao Nguyen: 24:08

I think that we always want research to move a lot faster than the reality. I wish I could tell you that this is a question of a year or two and next year, we have a solution. It takes a lot more time than that. But having said that, I would say that there's a whole spectrum of types of research. Some research is just about ready to be commercialized or maybe it's already a product that exist, for example, a new test or a new drug and it's really about finding the appropriate or the best way of using it. So one can imagine that if you did research, and it took a year, perhaps a year, the next year, you would have an answer that is actionable. There is other research on the other hand, that is a much more kind of a long-term goal. If you needed a new drug, you know that it that's not going to happen overnight. And so we need to also have the long range because you said yourself, the timeline, we're trying to prevent a problem. Some of it is happening now. But it's also what's going to happen in five years and 10 years, in 20 years. So there is a long game and some of the discoveries may take 5 or 10 years to be to go to the next level. But we it's very important to invest in them as well.

Tarah Schwartz: 25:28

No, absolutely. And I'm curious Dr. Nguyen, because you are the Director of the Antimicrobial Resistance Center at McGill, you are on the front lines of everything. You've mentioned already, all of the issues and that there is great concern if we don't find solutions. But I wonder on the flip side of that, are you hopeful that with all the work that's being put in it, all the great minds that are studying this and making it their focus that we will find solutions? And that we won't get to that point? Are you that hopeful person?

Dr. Dao Nguyen: 26:00

I am definitely that hopeful person. I think that research and the human mind when there's a will, there's a way, and there is a big problem indeed. But until a handful of years ago, I would say even like until maybe perhaps three or four years ago, our community was not really paying attention to antimicrobial resistance. Since then, I've McGill and the MUHC, but also nationally up in Canada and worldwide, there is a lot of effort to now focus everybody's resources and tension on this problem. I think that by recognizing that and now that scientists and doctors know that they need to put their heads together and come up with some novel solutions. I'm sure that this will trigger a lot of innovation. And we're going to see in the next few years, things that had just never been developed before because it was not a priority, but it is a priority now.

Tarah Schwartz: 27:08

And as it should be. Now the AMR Center just received two donations, the Hewitt Foundation donated$360,000 to help create the ICU Platform in Infection Research, And Rio-Tinto gave half a million dollars to the Antimicrobial Resistance Center for the creation of the Antimicrobial Discovery Incubator, I would love to know how you feel philanthropy is essential to supporting this center.

Dr. Dao Nguyen: 27:34

I think philanthropy is really critical because we were facing a lot of needs. As I mentioned in the past, antimicrobial resistance was not necessarily a priority, and not something that traditional funding sources were necessarily aware of until a few years ago. So now we need to move fast. And in order to build the infrastructure to be ambitious, and to have high risk but high impact ideas, and what is the most flexible and nimble and who's willing to think big. I think philanthropy is the way to be able to act that quickly. It takes years now for our government to kick in. And so until then, we need to start working. And so with the donations, this is really going to kick start on a timeframe that would not be possible to launch the programs and the research projects otherwise.

Tarah Schwartz: 28:44

It's comforting to know you are on the forefront of this. Dr. Dao Nguyen. Thank you so much for joining us on Health Matters. We really appreciate your time.

Dr. Dao Nguyen: 28:51

Thank you very much, Tarah for having me today.

Tarah Schwartz: 28:53

Next up on Health Matters supporting patients with genetic diseases. I'm Tarah Schwartz. Welcome back to a special best edition of Health Matters. Shawnea Roberts has lived with a genetic illness her entire life. While this experience would have discouraged some people, it has inspired her to help others. How is she doing that? Once Shawnea Roberts met Dr. Don Vinh, who you just heard from, he committed to finding answers to her condition. So Shawnea and her family committed to raising$2.5 million to help Dr. Vinh create the Centre of Excellence for Genetic Research in Infection and Immunity. Darlene Hindley is Shawnea's mother and she joins me now. Hello, Darlene.

Darlene Hindley: 29:38

Hi, Tarah, how are you?

Tarah Schwartz: 29:40

I'm super well, I'm happy to be talking to you today. Let's start with the name of the family fundraising initiative. It's called the SDR project. Why is it called that?

Darlene Hindley: 29:49

Correct? That's actually Shawnea's initials. So her name is Shawnea Dylis Roberts. When we were trying to find a name, we wanted it to project about her, what she stands for, and we thought her name and her initials would be the way to go.

Tarah Schwartz: 30:05

And it's nice and catchy, the SDR project. I like it.

Darlene Hindley: 30:09

It is and it works in English, French, and it seems to correspond with what we want to do and with the project that we're putting into place.

Tarah Schwartz: 30:18

So let's talk about that project, Darlene. Why are genetic diseases and Dr. Vinh's research a cause that is so close to your heart and your family's heart?

Darlene Hindley: 30:28

In 2014, my daughter was diagnosed after many, many illnesses throughout her life. She was diagnosed with stage four Hodgkin's lymphoma. Much to our surprise and to our obvious devastation. Her doctor, Dr. Chantel Seguin, who was her hematologist at the MUHC through the Cedars Cancer Fund decided to put her on an eight-month regimen of chemotherapy. Through this there was many tests, about 12 scans and different biopsies that came back. And we found that we had no answers. We could not find an answer to what was plaguing Shawnea for all of her life. And as a mother, you want answers.

Tarah Schwartz: 31:19

So you met Dr. Vinh?

Darlene Hindley: 31:21

Correct. After about 18 months of inconclusive therapies and scans, Dr. Sagan referred us to Dr. Vinh. We met with him. He went in an in depth analysis of our family background, our family history, our medical files. And through that meeting, he said one thing that triggered us. He said... I'm sorry. I get a little emotional, sorry. He said, I'm going to find out why this is happening to Shawnea. All the treatment that she had received all her life- nobody had ever asked why this was happening. And that, as a mother, was key. It was the key. So we focused on him; we couldn't believe his attitude. And he said he will not stop until he finds the solution.

Tarah Schwartz: 32:14

I think that's so beautiful. I think any parent out there is feeling everything with you right now. Because the idea of our children being sick is so difficult. So I think your emotions are very well placed. And I'm sure must have been a very difficult time.

Darlene Hindley: 32:30

You never expect it. You never expect it and she didn't have any symptoms. She had a pain in her chest. That was it- one night, for a few hours and that was the only symptom and it was stage four cancer. So it really... it hit us like a ton of bricks, for sure.

Tarah Schwartz: 32:47

Yeah, we're speaking with Darlene Hindley. And we're talking about a family's fundraising initiative called the SDR Project to raise$2.5 million dollars to help understand and treat genetic illnesses. Now you have a fundraising goal, which is pretty significant, $2.5 million. And incredibly, you're almost halfway there. What does it mean to you that the community is supporting you in this way?

Darlene Hindley: 33:12

We've been in fundraising; my family, my father, Jim Hindley has been in fundraising all of his life. Since the age of 16, raising money for various important causes throughout Montreal. And so when we met with Julie Quenneville from the MUHC, and we said, how can we help? What can we do? Selfishly, obviously, for my daughter, it helps her case. But moreover, it helps the community at large. It helps anybody who does not have an answer, and wonders why this is happening to them. And I think anybody who's hit with any medical diagnosis, can understand that and can relate to that. So we met with her and we decided an initiative and we wanted to find out what does Dr. Vinh need. He's an incredible researcher here in Montreal, and we are so lucky to have him. He is apparently very well-known within the hospital community as Dr. House, and he finds the answers. He's cured people from diseases, and he's found new diseases, and he works with a consortium of doctors and researchers around the world. And he's invaluable to our community and going forward. So his genetic research which really intrigued us was that he's into personalized care and finding out your genome sequence to find out what is going on with you. What do you need? Somebody can take a Tylenol, somebody has to take an Aleve, somebody could take an antibiotic, strong one or a mild one. So, why? Why is that the case? And what does your body need?

Tarah Schwartz: 34:56

Yeah, he is an incredible researcher. I have all the love in the world for Dr. Vinh. And I'm so glad that you're doing this fundraising initiative room because I agree with you. I think he's going to help countless people. Now Darlene, you have the SDR project luncheon coming up in a couple of weeks. What is the goal of that kind of event?

Darlene Hindley: 35:13

Those luncheons- what we do, what we ask the community is we ask for a pledge of $5,000, payable over five years. So it's $1,000 a year with a tax receipt. That's generally what we require, what we ask of people, and the response has been phenomenal so far. So with our luncheons we've only put on two so far. And we have raised almost a million dollars at those lunches. When anybody comes in, they hear Dr. Vinh speak, they hear Shawnea's story. They are moved by it. They want to get involved. They realize what we need in Montreal and the talent that we have in Montreal. We just need to give the talent, the equipment, the tools, in order to bring us into this century. To bring medicine to where it should be. And where we all have to be for future generations to come. So that is what we ask; and the Aziz family so graciously donated to buy one of the machines already. It is on its way; it's in production. And yeah, we can't thank the community enough for standing behind us and this project.

Tarah Schwartz: 36:29

Yeah, it's incredible. Now, you mentioned that your daughter had been struggling with her health; you're understandably emotional about it. Tell us how she's doing now.

Darlene Hindley: 36:39

Now she just had her third baby. So she's doing very well. She's never out of the woods. There's always something that pops up along the way, which gives Dr. Vinh another tool in his case for her. So he says, there's a soldier in her body that's laying down on the job, and he's got to find that soldier. So that's basically what he's looking at. Every time she comes up with an illness, or an issue, she relays it to him. It gives him another piece of the puzzle. Overall, other than that, she's doing fantastic. She has three children now and she's doing great.

Tarah Schwartz: 37:22

That's incredible. I'm so happy to hear that. And Darlene as a mom, and I'm sure all the moms out there are standing beside you. We are soldiering on with you. And I just want to say congratulations, and thank you so much for everything that you're doing- for not just your child, but all the children out there who are going to need this kind of help. So thank you so much.

Darlene Hindley: 37:39

Oh, my pleasure. You know, I worked with the Children's, I worked with all the hospitals within the MUHC. All my life has been dedicated to raising funds and to helping people. And I truly believe in this project, I believe in Dr. Vinh and I believe in Montreal, which is great. We have talent and we need to give them the tools to succeed. So, thank you so much, Tarah for having me on. Sorry for the emotions.

Tarah Schwartz: 38:06

Don't be sorry. I feel it all. I feel at all, Darlene and I am right there with you. Thank you so much for your time today. If anyone would like to learn more about the SDR project, Dr. Vinh's work, the Hindley family who are doing their best to raise $2.5 million for this incredible Centre of Research, just head to MUHC Foundation dot com. And you can get more information there, the SDR project, Darlene Hindley, thank you so much for joining us on the show today. I appreciate your time.

Darlene Hindley: 38:32

Oh, thank you, Tarah. I appreciate your time. Thank you, everyone.

Tarah Schwartz: 38:36

Thank you so much. I am Tarah Schwartz. Thank you for tuning in. What would you like to hear about on the show? Write to us at health matters at MUHC Foundation dot com You can also follow us on social media and sign up to our newsletter so you never miss anything, and hear all about the people and the stories we talked about on the show. It's all at MUSC foundation.com. I hope you'll join me again next Sunday. Thanks so much for listening and stay healthy.