Derek Zimmerman

I think sometimes, you know, in life, you look for something you want to dedicate to a cause that's a little bit bigger than yourself.

And when it's something that both touches home, but also you see this is an organization that came from much smaller to now it's a very strong organization for advocating for patients, for fundraising, for pushing things forward in research. And you think to yourself, well, that's an organization that I want to be a part of.

Narrator

Welcome to the PDSA podcast, Bruised but Not Broken: Living with ITP. The diagnosis of a bleeding disorder like immune thrombocytopenia may leave you wondering, how can I really live my life with ITP? PDSA's podcast, Bruised but Not Broken: Living with ITP, brings empowering stories, the latest research and treatment updates, lifestyle tips, and answers to the real life questions the ITP community is asking. Here’s your host for this episode, Barbara Pruitt.

Barbara Pruitt

Greetings. I hope you're having a great day today, and I'm glad you've tuned in to today's podcast. You know, there's terms that we hear in life that we may not understand. It's especially true when you're dealing with medical issues, as we all know. But regarding a nonprofit like the Platelet Disorder Support Association, do you really know what a nonprofit is? Or how it works? How is it governed? What is a board of directors? And what is; what does the board of directors do? Well, today we're going to answer those questions. I have two very special guests with me today.

The first is my husband, Peter Pruitt, which you may have met at past conferences. He has been the chairman of the board for the past 17 years. So welcome, Peter.

Peter Pruitt

Thank you. Great, great to be here. Now I'm sure some of your listeners have heard me before as you've had me on some other podcasts, but I'm very thrilled to be here today.

Barbara Pruitt

Well, why don't you introduce our second guest today? I'm gonna give you that privilege.

Peter Pruitt

Well, okay. We're joined today by Derek Zimmerman. Derek's been a fellow board member for with the for the PDSA since 2018. Derek ah is a business major, graduated from Stetson University with business major and then got an MBA from the University of South Florida. He's the CFO and Vice President of Business Operations Investment at a consulting engineering firm based in West Palm Beach. And we've been fortunate to have him on our board. And welcome to the podcast, Derek.

Derek Zimmerman

Oh, thanks. I appreciate it.

Barbara Pruitt

Welcome, Derek. I'd like to start off with, could you tell me a little bit about how did you get involved with the PDSA? I know you were diagnosed with ITP. Can you tell us about your journey?

Derek Zimmerman

Sure. So, in 2003, That's when I was diagnosed with ITP. It was off of a routine blood test for me. And my platelets were about 20,000. At that time, I had never heard of ITP and wasn't more familiar with it.

I had mentioned to my hematologist that I didn't. know a lot about it and you know, what kind of stuff and what's the prognosis. And he went over some of that with me, but he mentioned there was a couple of groups online that other patients had gotten some information out. So, went online, found PDSA as one of the organizations and found out they were holding a annual conference.

That year it was in Baltimore in 2004. And four and so my wife and I and our kids who were young at the time headed up there. And now that was the first time I was, and you know, had had been involved with PDSA at that point was that.

Barbara Pruitt

I was going to say, how long did you have ITP since your diagnosis and your first conference? How long was that?

Derek Zimmerman

I was diagnosed in December of 2003 and the annual conference was probably in July I know we do it in July now so I would say what roughly seven months I was on steroids that whole time. They were tapering me off, but as I would taper, my platelets would go back down. But on the steroids, they were pretty normal. So, we came up there. We had a lot of questions. I got a lot of good information out of it.

But the organization was still fairly young and quite a bit smaller at the time. Then after that, within a few months I was tapered off. I had a remission of about five years at that point. So, I didn't really come back to any other annual meetings. But then when my platelets dropped, the next time they dropped to pretty much zero. They checked me into the hospital. And then we started coming back to the meetings to start gathering some more information and find out if there was any new treatments. um Because when I was initially diagnosed, it was a lot smaller group of treatments. I think it was like steroids, WinRow, and maybe get your spleen out. And we were trying to avoid the spleen. So then when I came back, we started, um I wasn't getting remissions anymore, so we knew that I would be more involved. with ITP on a day-to-day basis. And I was able to call PDSA and Caroline Kruse was the president at the time. And she answered some of my questions. I found the medical advisors and the question and answer session at the annual conference to be really helpful. It gave out a lot of information. We found out a lot of stuff about new treatments, some of which I took back. My hematologist wasn't familiar with ah with one of them, but he was with most of them.

So, I thought, hey, this is a good organization. And then, you know, being a nonprofit, we knew that it would take like some volunteer type stuff and we knew it would take some fundraising. So we did a little bit of that and just got more and more involved as the years went.

Barbara Pruitt

So, at the conference, you must have walked away feeling a bit empowered knowing of all the variety of treatments at that time, because actually through those years when you were in remission, there was quite a few other treatments that became available.

Derek Zimmerman

Yeah, correct. Although interestingly, they kept they put me on steroids again and left me on that for quite a while. We did get off of steroids and I tried, there was a couple treatments we tried. I think Danazole or something like that was a hormone replacement and we tried Rituxan, which worked, but I had a pretty strong reaction to it. But knowing that there were other drugs in the pipeline from stuff that I had gotten out of the annual conference um kind of kind of made me more confident.

Barbara Pruitt

Yeah, it gave you hope at least.

Derek Zimmerman

Yeah, it did. I think the other thing that the conference did was, you know, and the very first one, when you go to it, like you get ITP, you get your diagnosis and no one else has ever really heard of it because it's not the most common of disorders. So, one of the things I think I came out of that with but feeling more confident was, is hey, there are other people who have this. There are medical experts working on this. And a lot of the people I talked to, I found out, hey, they've had it for a number of years, which at the time, you know, and I didn't realize that. I wasn't, mean, you're not even sure what the prognosis is going to be long term, right? So those kind of things made you confident.

Barbara Pruitt

Yeah, connecting with other patients is something that I think is so important for a patient going through a diagnosis like this.

Derek Zimmerman

I agree.

Barbara Pruitt

And sometimes, I mean, not always, but sometimes I think it's harder for a man to reach out, um you know, to an organization like this. What's your feelings towards that?

Derek Zimmerman

Oh, that's interesting question. I can see that. Yeah, I would say I could see that with some people. ah The way I would say my mind works, I find it a little bit harder to let go of something until I get more information. And I think the only way to find out that information a lot of times is to, i guess, reach out. um I think I felt i felt like... There was obviously research online I could do. then Then there was my doctor who gave me a lot of information. But then you show up at one of these conferences and yeah I mean, you can ask a lot of questions. You can pick up a lot of information off of tables and the booklets and the pamphlets. You can ask other patients, hey, what have you been through? And I guess I didn't really find that a problem. I'm not sure if I really considered that reaching out as much as gathering research and figuring out where do I go with this? How am I going to handle this? And I think mentally, it would be hard for me to let that go until I do more of those kinds of things. Yeah.

Barbara Pruitt

So, you were searching for answers and this was a way you could get the information that you were seeking.

Derek Zimmerman

Absolutely.

Barbara Pruitt

I think that's an important perspective, you know, when you're dealing with something like this.

Derek Zimmerman

Yeah, I would consider it more like almost like a self-empowerment. I'm going to go out and figure this out as opposed to, you know, I'm really reaching out here because I'm not sure what to do. But I think if that was the situation, that would be okay also.

Barbara Pruitt

And did you find like a connection? It sounds like you did when you went to the conference, you found a connection with these other patients. I mean, we all are kind of walking in the same footsteps, aren't we?

Derek Zimmerman

Yeah, I would agree with that. It's interesting because I would imagine every disorder or disease um has that more personal component, but some are more known. So, you maybe can find a support group or other people who at least kind of understand what you're going through a little bit quicker. But on this one, I didn't know anybody else who had it. And you know, we mentioned it to people and no one else had knew anyone else who had it. So yeah, when you show up and you find out, hey, there are other people who have this and there are medical experts working on this.

Barbara Pruitt

Yeah.

Derek Zimmerman

Yeah, it makes you feel um ah considerably better and probably a little bit included in a community that you're not expecting to find.

Barbara Pruitt

I know it's very isolating. If you're trying to deal with this all on your own, you're kind of in your own little island and to find other people that are traveling on the same journey really is empowering. And, and I think that's one of the things that the conference and the organization has to offer the patients, which is, which is great.

Derek Zimmerman

Yeah. I think it does. And you know, and yeah mean I'm not sure like if I necessarily felt that found that isolating, I think a big part of that was because my hematologist was very familiar with it. And at the time, I think he told me at the time he had seven or eight other patients who had it. And so at least from that aspect, I knew there were other patients out there. I didn't know who they were and I didn't know how long they had had it. Yeah, I'm not sure I ever felt necessarily isolated, but when you come up to that meeting and you start meeting other people, you find out, hey, yeah, some people are, because I was surprised how many people had hematologists who didn't have any other patients with this disorder. I was surprised by how many people who originally maybe went to a general practitioner who didn't even know what it was back then. I think it's more well known because of some of the work both PDSA has done and stuff you can find online, but ah I could see where people started sharing information like, hey, maybe that's not the right doctor. Why don't you go find a hematologist who might be a little bit more specialized than that? And I think that was one of those things that um I think is a strength of PDSA.

Barbara Pruitt

Yeah, yeah, to look to seek out somebody who's actually had experience with patients with ITP and is actually keeping up to date with the new treatments and information on it.

>Peter, tell me, and I'll tell everyone else because I know your story. But how did you become the chairman of the board? I mean, you've been in that role for 17 years now. So, could you tell us a bit about your journey?

Peter Pruitt

Oh, well, I guess it kind of started little bit when Barbara, when you first found PDSA, which was probably in about 2003, maybe, roughly, you had and you've told this story, I'm sure on your podcast, that really had never met anybody else with ITP.

Barbara Pruitt

Yeah, probably. Right.

Peter Pruitt

One night when you couldn't sleep, you found you the internet became more popular, you found this PDSA and you, well, next morning you were so excited that you had found this organization and then went off to a conference um and, and immediately said, I'm going to get very, yourself, yeah I'm going to get very involved in, in the PDSA. And you did ultimately became a board member. And ultimately, as I recall, you were the chair, correct?

Barbara Pruitt

Right.

Peter Pruitt

And at the but at the same time, I think probably shortly after this, not too long after this, I was asked to move to Washington, D.C. where and run the audit practice for the firm was with Deloitte. And we were both like, this this seems to be meant to be because the PDSA was based at the time in Washington, D.C. And you were getting more involved and it just made great sense. So, off we went to Washington, D.C. I had never very been very involved with the PDSA. You had been involved for a couple of years, you're now on the board, then you became the chair. And however, at the time, so we went to D.C. and then however, at the time, you were in two of the original, when the first two TPOs came out in clinical trials, one followed after you tried them both which had a really significant impact on your general health. You just didn't tolerate them well, or you had a lot of side effects, you were just pretty worn out.

Barbara Pruitt

Right.

Peter Pruitt

The bad fatigue, you had really bad fatigue. At the same time, ah at this point in time the founder of the organization, who many of you may have on the point podcast may have heard of, Joan Young, who founded the organization, had had decided to retire And you had gone through a search process and found a successor to Joan. So you ended up having to step down as chair and the prior chair, Matt, took came back in as chair.

Barbara Pruitt

Right.

Peter Pruitt

And I guess this part I didn't know because this was before I got involved. There was a lot that with Joan coming out and the new person who became the executive director, things were not going well at all.

Financially, operationally, in every way. So at this point, you're not involved in the PDSA like you were before. And I remember sitting in my office one night working because at the time I'm now running a big practice as well as serving clients. So I would do my practice work at night, sitting my office home. and you walk in and you said, I need you to do something for me. And I said, what is this? And you said, I need you to be the chair of the PDSA.

Barbara Pruitt

Right.

Peter Pruitt

And of course I said, yeah, honey, anything you need me to do Now, why me? And you had obviously thought this through, talked to Matt, talked to the board about this, because I had chaired number, chaired and treasurer a number of large, fairly large not-for-profits. Most well-known people on this webcast would be the Orange Bowl Committee. I had been the president, chair of the Orange Bowl Committee and a bunch of organizations. Fairly large. So you knew i was pretty well versed in corporate governance as well as had been involved with well run not for profits, as well as all the other clients as my role as an auditor I dealt with. And that was what you felt was needed at the time was somebody with a business background to come in.

Barbara Pruitt

Exactly. Right. Right. Because even though being a nurse, I had somewhat of a medical background to run an organization. i felt very strongly, especially at that time, that we needed somebody that has strong business and history and that could run the organization from that standpoint. And that's why I twisted your arm and you gave in, fortunately.

Peter Pruitt

And so that was 17 years ago, right? Until just recently, at the beginning of this year, Derek seceded me as the chair.

Barbara Pruitt

Right.

Peter Pruitt

And we've come a long way since then. And just to give some history for those here, at the time I joined as chair, we made I think we had decided, don't know whether, I don't know exactly when, but it's really much at the same time decided we needed to get rid of the person who was running this organization. So we got, that's that, we got, I got rid of the person who running and that's when we asked Caroline who was on the board to become the executive director and eventually weeks she became the CEO.

Barbara Pruitt

Right. Well, we asked her to be the interim chair which she agreed to. And then when the other, you know, when it fell through, we did ask her afterwards if she would step in as the chair.

Peter Pruitt

Not the chair, the executive director.

Barbara Pruitt

Not the chair, I'm sorry, as the executive director.

Peter Pruitt

Executive director.

Barbara Pruitt

Yes, yes.

Peter Pruitt

So basically Caroline came into our roles at the same time.

Barbara Pruitt

Right.

Peter Pruitt

At the time, I would say the patient-facing stuff was still running pretty well. But financially and operationally in the background was not good. We basically had no money. And so the board and myself, we got to work on what do we need to do to stabilize the organization and move forward. Now, the work was really not done by the board. And I know we're going to talk at some point about what's the role of boards. But really, Caroline, who ran the runs of the day as the CEO, would run the day-to-day operations and team got the team and organized the team and did all the things you need to do to stabilize the situation and start moving in the right direction. And that that was ah that was a, for many years, Caroline did a great job of kind of moving us along. Our financial situation got a little better, but we still were not financially sound. And then things started to change. You know, the TPOs, about this point, you now the TPOs. She had these two new treatments. And little by little, all of a sudden, more and more companies became interested in and developing drugs for ITP. And this was really driven by, I think pharma companies realized that there was money to be made, as we all know, these drugs are all expensive, right? There's money to be made in rare diseases.

Derek Zimmerman

Yeah.

Peter Pruitt

Opposed to you know, like they had in the past, so there a lot more effort was being put to develop drugs for rare diseases. So began more and more drugs coming along well also at the same time there really was a big push and you saw that the beginning at the early stages, Barbara when they started wanting to hear the patient's voice in the drug approval process, right? I know you testified for the TPOs, even though they didn't work for you, you actually testified in front of the FDA about the importance of approving them, because they want to hear the patient's voice.

Barbara Pruitt

Well, the importance of having a choice, because we had very few choices and it was important. To have more choices. And I knew that those TPOs had been very successful for a lot of people. So even though it didn't work for me, it still needed to be available.

Peter Pruitt

And I think that was a powerful thing when you came and testified, you need to prove this and why, even though it didn't work for me. But that patient voice became man much more important in the process, the approval process. So the pharma companies realized we need to have, we need to, you know, even though we support in some way, we need to have a much closer relationship with the patient support. So all of a sudden, there's more development of drugs for the rare disease, including ITP. And the patient voice becomes important. So, all of a sudden, they needed us more than they did before. That they didn't support us. They did support us. But now they needed us, which just changed the dynamics a little bit.

Then we saw an even further acceleration of the number of drugs being developed. And Derek, you were on the board as we saw this just start to blossom.

Derek Zimmerman

Yeah, exactly.

Peter Pruitt

And the most interesting way to describe it is when I would go to ASH, so as the chair, I would go to ASH, you know, along with Caroline. And there we would meet with a handful of pharma partners, mainly the two TPO folks at that time, and meet with them about what we're doing and make sure we secure the support we needed. And then we'd spend the rest of time at our booth meeting with doctors. Well, Derek experienced this this year going to ASH. Essentially, we were in meetings with pharmas from the opening the conference to the end of the conference because there's that much development. There's 10 to 12, over the last 10 years, it seems there's been 5 to 10 to 12 drugs and in development. Always interesting to us, and particularly as that we talk to our medical advisors about why that is, um And I think a little bit of that is there's been a lot of focus on autoimmune diseases because there's a lot of drug developed for autoimmune diseases and many of these drugs work for multiple autoimmune diseases. I mean, there's one we see on TV all the time that originally started as an ITP drug for Gravis or something. Anyway. If you're trying to test efficacy of a drug under development going through your trials, it's certainly easy to see whether your platelet count went up or not instead of something that's a much more complicated determine efficacy. So, the first place to start, if ITP is one of the indications is do ITP first. So we've seen, and that has allowed us to go from being having no money 17 years ago to be a very, very financially sound organization. We still do amazing things. Caroline and the team do amazing things with a small staff. It's incredible what they can accomplish. And when we go and Derek Spears this year at ASH, which was in December, when we go meet with these pharma partners, they all talk about how unbelievable the PDSA is. It is by far the model of what a patient support group should be. And they wish they were all like that. And we hear that pretty universally. So that's allowed us to get to the point where today we have significant operating working capital.

We have plenty of cash for working capital. We have, oh gosh, I think almost $3 million dollars in our research fund. We have another $4 million dollars or so of investments that will support the organization as we either the research piece or other initiatives we may have to better serve the patients. So, we've come a long way in becoming much more financially sound, little bit of luck. But most of it due to the great work that Caroline and the team has done across those 17 years. So, it's been an interesting and interesting run for the organization

Barbara Pruitt

Well, one thing you touched upon is the advocacy of the patients in the organization. And I know that that has made a big difference. And that has really blossomed. There's, you know, platelet walks all over the country. And, you know, people are finding unique ways of raising money. And I know Derek, you and your wife Sherry have participated in some of that. Can you tell us a little bit about what you've done in the past?

Derek Zimmerman

Yeah, I would say, I guess, ah beyond um some personal donations. And then getting a little bit of family involved, especially my parents. They've donated generously over the years. My wife, Sherry, is a runner and um runs half marathons. and even to marathons. But she likes the half marathon and she's done, she used to do, what was it, Leukemia and Lymphoma Society of fundraising. Then after I kind of had this ITP diagnosis, she was able to um switch some of her running these races and raising money as she ran, um i guess, kind of under the pump it up for platelet type runs um and raise money doing those things. And she would raise money with ah like silent auctions and, you know, that kind of stuff and then get people to donate for her running um and has done that over the years. That's probably the biggest like fundraiser type stuff we've done other than and then and then I worked with a friend's foundation who donates to non-profits and they were able to learn a little bit about ITP and kind of do an annual donation for that as well.

Barbara Pruitt

That's terrific. I've found that the more people you talk to about it, the more input you'll get and people wanting to help. And sometimes, you know, some a simple fundraiser, something that you're doing anyways, like Sherry's running marathons anyways, why not use that as a modality to raise money for the PDSA? People can get very ingenious about that, which is great, which is terrific.

Derek Zimmerman

Right. Well, her and, you know, her friends, you know, they go run and, you know, they'll she'll put on the yeah like the sport purple for platelet outfits and ask me about ITP, you know, printed on the back and, um you know, people will ask, people will be interested. And, you know, not only is it raising money, it's getting, getting some more visibility out there.

Barbara Pruitt

The awareness is important because, you know, when people recognize, oh, ITP, I've heard of that, you know, tell me a little bit more. It's interesting how more and more people recognize ITP or they've heard of it or they know somebody with it. um So it always helps to spread the word.

Derek Zimmerman

Yeah, it's interesting because when I first got it and even the first few years where I was still working my way through it, like I just didn't run into that many people with it. But and you still don't. But it is interesting because I'm not; I mean, you know, I'll talk about it. I don't have a problem with it too much. And the more you talk with people, sometimes some people are more private than others and some talk more than others. And you start finding out that people have other immune disorders and you get to know each other kind of and bond in a way over that type of thing. But even then, like, ah you know, ah one fellow that I worked with for several years, ah we were talking about something and I just mentioned, oh, I got a platelet disorder, blah, blah, blah. and He said, ah oh, my wife does too. And then we found out, oh, she has ITP. I mean, I'd worked with this guy for a number of years. it just, until it finally came up, you know, and you're like, oh, well, that's really interesting. You know what I mean? And then it turns out we're on the same medicine. And that gives you like a whole nother personal side to what was really just a business relationship before. And then one of my sons was in school and one of his teachers, when I was in the hospital the one time, with a platelet countdown near zero, and they were trying to get it up. My boys were young and wanted to come into the hospital that day instead of hanging out at school. And the teacher was like, oh, yeah, I know what that is. I went through all of that and was diagnosed when I was pregnant with my first kid. So she had a complete understanding of what it was. but it was interesting. So, yeah, um when you do run into someone who has it, they're almost equally happy to find out they've met somebody with it. So, yeah, it's an interesting thing.

Barbara Pruitt

I know you've got a lot of experience having ITP. And I think that's important when you are serving on the board that you've got a connection to the organization directly. How do you think your experience with living with ITP is going to help you as far as being the chairman of the board?

Derek Zimmerman

Right. So, I mean, I think the first way it helps is you are very personally involved and self-interested, the cause, right? Cause, um, on our board members, we either all, it seems like hey we're either diagnosed with ITP ourselves or we have a family member who's close to us that has it. So there's a very personal connection to, figuring things out and how you're going to move forward. Then when you get involved with an organization like PDSA, you see, hey, there this is an organization that is advocating on the part of the patient. That's important, h obviously, to the patients. But I think sometimes, you know, in life, you look for something you want to dedicate to a cause that's a little bit bigger than yourself. And when it's something that both touches home, but also you see it's like Peter said, this is an organization that came from much smaller to now it's a very strong organization for advocating for patients, for fundraising, for pushing things forward in research. And you think to yourself, well, that's an organization that I want to be a part of. And that's an organization that I would like to help move forward in trying to give back. um So I think the first thing it helps in is that it just makes you dedicated to the cause that we're all kind of on the same team trying to solve the problem trying to move forward and trying to help others who we can relate to because they have the same problem as us. Then I would say the other way it helps is I mean it's been what almost a little over 22 years for me so I'm just pretty familiar and experienced with a lot of the terms and where the organization's been, where the organization's going. And so not quite as much as Peter, but I still have a pretty good background in the history of the organization and um where it should move going and forward.

Barbara Pruitt

And looking into the future, I know, you know, we all have hopes for the organization. What are your hopes for yourself and, you know, our ITP community?

Derek Zimmerman

Oh, that's interesting. I guess, I guess we're starting more with the ITP community. I mean, in terms of the board and where the board goes with this, I think the first thing is, is let's just keep things going in the same direction it's been going. It's going well. There's not a lot of ah reason to, uh, rethink and, and re and change direction on anything. I think in terms of hopes and goals, I would see just continuing the advocacy that we do on patients' behalf. There's the advocacy in terms of the ah drugs and the research, but also you know there's the um the Washington, D.C. Hill Days that we've done and in meeting with politicians in order to help the organization raise money that would directly go to research and finding new treatments for the for maybe the people who haven't ah been able to find a treatment that work or maybe the treatment that works for them is one of them that has the stronger side effects. So I would say I would hope to keep the advocacy Moving in the same direction. And then I think the other big thing is, is we'll keep the finances strong. We'll always be responsible for that.

Barbara Pruitt

Well, I have to say, I know that the PDSA was honored to get the stamp of approval from the charity navigator. And in order to be recognized by them, it takes a couple of years and applications and stuff. And they rate you on leadership of the organization, programs that the organization has, financial transparency and a lot of other things that they want all your and all the information on. And out of a 100 rating, the PDSA is rated 100. So evidently they've got very highly of the organization and how it's being run.

Derek Zimmerman

Yeah, that's impressive. Yeah.

Barbara Pruitt

So, I think as a patient being a part or a member of PDSA, you can feel confident that it's doing the right kind of work for the patients.

Derek Zimmerman

Yeah, and I think that score of 100 is a credit directly to the a lot of the leadership, you know, both that Caroline provides and that Peter have provided. So I'll hope that when I'm in there, we don't drop to a 99 or anything like that based on leadership rankings.

Peter Pruitt

It's all Caroline. but yeah know It's not easy to get. i mean, I'm involved with not-for-profits and you we have to provide your tax return.

Derek Zimmerman

No, no, I don't think so. It's impressive.

Peter Pruitt

They're looking at your financial health, financial strength. What portion of your funding goes to programs? Is it like mostly going to administration or programs? has to be a really high percentage of that. So a lot of stuff A lot of people who foundations want not to give to not for profits and charities look at charity navigator that makes you probably.

Derek Zimmerman

I've looked at it for a couple of the of other ones, you know, that that we've dealt with too. No, and I mean, I think some of that is, I mean, again, it's a credit to the leadership, but it's also a credit to like just the size of the staff that this organization has to be able to um ah pull off what they pull off and how organized they are and the things that they can accomplish with the smaller staff means most of this money is going to, um research, advocacy, you know, patient information. And that's exactly the direction that you'd like to see it continue to go in.

Barbara Pruitt

Right. Well, I think the future looks bright with you at the helm of the organization there, Derek.

Derek Zimmerman

Well, I appreciate that. We'll try to keep things going in that direction.

Barbara Pruitt

Oh, I think I think you're the right person for the job. And I know my husband is kind of in a relieved that it's not on his shoulders anymore. He's been there for so long and I know he's enjoyed it, but he'll always be available.

Peter Pruitt

Derek wouldn't let me leave the board. made me stay on,

Derek Zimmerman

No, no, no, no, no that was no. That was my number one condition of doing this, was making sure that Peter stays on the board. There's a lot of experience, history, knowledge, and other things that you don't we don't want to leave the organization or the board. And then it helps. I mean, you guys know, but I'll just say it out loud. I mean, we live, what, about an hour, hour and a half apart. So you're in your list a little bit further in South Florida than I am.

Peter Pruitt

Right.

Derek Zimmerman

But that's going to give us an opportunity to, ah you know, talk and meet as we need to. And I can glean some of that information off of you as we move forward and in the direction that we're going to go.

Barbara Pruitt

Well, with you all and the other board members, there's definitely a feeling of passion that you all share for the organization. And I think that's terrific. It makes me feel very confident in the future and it should

Derek Zimmerman

I think so, too. I mean, I think another reason why, um you know, not only am I was I willing to be on the board, but I'm, you know, taking over as board chairs. I mean, The leadership's strong. The staff that works at PDSA is such a good and high-quality staff, but the members of this board, you know, it's an impressive board. There's a lot of knowledge. There's a lot of good opinions when we have our meetings, and um there's a lot of good stewardship nd input and participation from the board when we have our meetings, and ah I think there's a lot of experience and dedication that sets this board apart from some of the other boards that I've been a part of. So, I think it's impressive.

Barbara Pruitt

I think you've answered a lot of questions that people may have about a board, a nonprofit board in particular, and also the future of the PDSA. It looks very bright. And thank you, both of you, for all your participation and hard work because if you're not aware, when you are a board member on a nonprofit board, you don't get paid. I don't know that everyone realizes that. this is These people on the board are doing it out of the goodness of their heart. They have a passion. They have a reason to be there that they want to contribute. And there's no you don't get paid for that. And their travel you know to the conferences and stuff, is their own nickel they're spending. So, we appreciate that.

Derek Zimmerman

I think the only other thing I want to mention too is ah I think one other reason that it's I like being part of this organization is this the medical advisory board that we have um is a such a ah world-class group of doctors that it's humbling just to work with them. And I appreciate that part of it very much as well.

Barbara Pruitt

Absolutely. They are phenomenal individuals and the work that they're doing for ITP is just incredible. So I think you're absolutely right.

Derek Zimmerman

Absolutely.

Barbara Pruitt

It takes, it takes a village to get this machine running. So there's a lot of different parts and we appreciate your help.

Barbara Pruitt

Peter, if you could, could you kind of explain what the board of directors job is? What is it that they do?

Peter Pruitt

Sure. You know, I've i' my role in my many years at Deloitte, where I worked with public company boards, I knew a lot about boards. Now, this in my retirement, I'm the part of the National Association of Corporate Directors. So, I know a lot about what boards do and what they're required to do. And so I'll give you a little bit because people misunderstand what the role of boards are. I mean, a lot, most people think that the boards run the company. Boards do not run the company. The company is run by management. in our case, Caroline and the team were run the company. So, what boards do is they provide oversight of management. Essentially, we provide oversight of management.

And they and they exist in the companies that have boards will have boards generally because there's owners who have no involvement in the company. So, they have no direct, they're owners, but they have really no direct line to management. So, a board is put in pay place to provide oversight of what management does.

In a case of a not-for-profit like PDSA, we have no owners. So, the board is put in place to provide oversight of management on behalf of you know on behalf of the beneficiaries of our not-for-profit mission. That would be the patients that;

Barbara Pruitt

The membership.

Derek Zimmerman

Right.

Peter Pruitt

Well, membership, but it's even a little bit more broad that because the memberships are this for the members, but it's even more broad. Anybody who is a patient and has ITP or is a caregiver, a but people who would be the beneficiaries of our mission, which is to provide information and support to. So that's what our role is. Our role is to provide that oversight when you have, in our case, not-for-profit beneficiaries of our mission or in a corporation where the shareholders may not have be active in the business. It's generally what causes a board to have to actually be created is state corporate law. So we are registered in a state as a corporation and the laws of that state will require if you're a corporation and not-for-profit or a company with stock, you have to have a board and the state corporate law would specify what the role and responsibilities of the board is. And those laws plus court cases, you know interpreting those state laws is what special really sets out all of what we're required to do as members of board.

Generally, what we do is to make sure the company or the not-for-profit is operating in accordance with its bylaws. So the bylaws are kind of the constitution of the entity, either the company or the not-for-profit. It lays out how the board is elected, their terms, how books and records are handle handled, what financial statements have to be done, reporting crimes, all kinds of things. And it's really in accordance with the state law. But a lot of that really isn't a lot of what we were supposed to do as boards is not really in those laws. It comes out of people who've sued book companies and set precedence to what the role of a board member is and what is providing oversight mean. So what we do as a board is in providing oversight is again, we don't run the company management runs that. know What we do is we meet regularly, quarterly in our case, right?

Derek Zimmerman

Right.

Peter Pruitt

We get briefed on the key things that occurred since our last meeting through reports from Caroline and the team. And that would cover financial results, might cover budgets, might cover marketing; might cover patient support activities. Actually, it'll cover for all of these things at every meeting. Planned events in the future, like our conference, how's that going? it so just But beyond that kind of just what's going on and making sure we understand what that is, there's really probably three areas that as a board, you really have to be definitely a provide oversight of in addition to all those things that your bylaws require and getting periodic updates on what's going on.

The first is strategy, right? So, management of the organization, our Carolina team will come together and develop what are the key things we're going to do to move the organization forward. So that's the strategy of the organization. That's developed by management. So, at the board, we provide oversight of that in that they brief us on what the strategy is. We probe, we ask questions, we make sure it makes sense, how they developed it, what the inputs were in developing it, why they're going in that direction. Is it achievable? Are we setting a strategy that just we can't? It's way over the top. You know. So all those sort of things. And a lot of that's just about asking questions about it and hearing the response of management.

The other thing, the second thing would be is there's only one, while we don't run the organization, we do have one, what you would typically call the or upper requirement management. The management of a company, we have one personnel hire and that's the CEO. CEO is hired by the board. Everybody else in the organization, everybody that works for Caroline, she hires, fires, evaluates, right? Again, she; we might put oversight over that.

Derek Zimmerman

Right.

Peter Pruitt

She'll brief us on how that's going, but we have one hire and that's the CEO. So we have to evaluate the CEO, set comp for the CEO, right? We have to think about succession planning for the CEO. And to do that, you also got to think about succession planning of the rest of the team. Who can come up from the inside and who would run the organization if something happened to the CEO? All of a sudden, who's going to run organization? So, we think about succession planning. The other thing on the talent side, sides that are responsibly for the CEO or responsibly for their succession, is culture. Culture is so important in an organization that

Derek Zimmerman

Yeah. Yeah.

Peter Pruitt

Management sets; management is responsible for making sure that the culture is there, that it's consistent with our values as an organization. But what we need to know, we need in our oversight role, that's what's going on. Because I will tell you, I've seen people who talk about their values, but they operate completely differently. And you're boarder, you're going to want to weigh in on that. Not that that's the case here. And understanding culture for us is not hard. We are, we, We have a small organization. It's very easy to know how they interact and how they work. You get into a big public company and you're a board member who meets you know six times a year. It's hard to learn culture. So that's a different subject. But for us, we want to make sure the culture is good.

The last thing is risk. We're responsible for management. We're responsible for identifying areas of risk to the organization, figuring out how you respond to it. But it's clearly the responsibility of the board to understand where those big risk areas are, get briefed on how we're going to respond to those risk areas. And I'll give you a sample, one we all hear about, cybersecurity, right? We have information, we have so systems that are made fairly simple for a small organization, but

Derek Zimmerman

Right.

Peter Pruitt

Which what's every company has cybersecurity risk. Right. So what are the big risk areas? You know, what is our what is our brand? What could impact our brand? What are the key things that could impact our brand? Right. We're not a corporation that puts out products, so it's not like you have ah just a terrible product that damages doesn't do what it's supposed to it damages somebody or but brand and all understand what the risks are and how management tends to respond to them or mitigate them.

So that's kind of the things we, that's kind of a nutshell, why we do ah as a board. Now we do pick our, we do pick our board and as, and we've tried to find a board we put together a board that has different skill sets that allow us to do that. Right. And you can't have every skill set you'd want, need to provide oversight, but you can get the ones you think are important. So, our board is made up of Derek, who's got he's got he got operational responsibility within a sizable engineering consulting firm. So he's got management expertise.

>Dale Painter provides one. He's an engineer by a training but provides very one important thing. He is he in Canada. And one of the things that we have done is form the Canadian patient support group. All So Dale is on the board because of his being from Canada and providing that some insight and having a board insight into what's going on Canada since we operate and fund the Canadian patient support group.

We have Bruce Prescott, who is was a senior person with one of the big financial firms. So he's got deep market expertise. So as I mentioned, if you were aware, I don't know where this is. I mentioned we have a large portfolio of investments that we've been able to accumulate over the last wonderful years we've had.

You have Bob Feiner, who was general counsel of a large public technology company. So, he's a lawyer. Besides having great insight into risk and some of those other things I talked about, he's a lawyer. It's always great to have a lawyer because you never know. You run into legal ah things, even in not-for-profits.

Then you have Leilani Fitzgerald. Leilani works for a large that but managed notman and that and not managed care company who provides insurance and that sort of thing in the medical and in the medical world. So, she has a lot of insight into that.

>We have Jennifer Grimes, who's a nurse. She was an emergency room nurse. So, you know, we put together a board that, first of all, has some connection to ITP, either as it has been a patient or caregiver.

And so that's how we put the board together. So that's a little bit about what the board does, a little bit background on the board.

Barbara Pruitt

Oh, thank you. That clears up a lot of questions regarding a nonprofit board. You've got a lot of work that you do that we don't see as members and patients, but we do appreciate all the work that you do. So, thank you for clarifying that, Peter.

>Well, that's it for today's podcast. And I want to thank Derek and Peter for joining today and explaining the role and responsibilities of the PDSA's Board of Directors. I think you've clarified a lot of things for us. And I really appreciate you being here today. So, thank you.

Peter Pruitt

Happy to have done it.

Derek Zimmerman

Yep, thank you for having me.

Peter Pruitt

Love the PDSA.

Narrator

How do you live your life with a bleeding disorder like ITP? From working in the kitchen with knives, to navigating sharp corners in your house, going out to eat in a restaurant, traveling on a plane, attending a sporting event, even dancing at a wedding. ITP patient, Barbara Pruitt, shares her tips and tricks for moving through life with ITP for more than 60 years. Here's her lifestyle lesson for the day.

Barbara Pruitt

If you're like me, you've probably bitten your lip or bitten your tongue or maybe even the inside of your cheek. And it hurts. You're going to remember it. Now, if you've got ITP, chances are it may leave a mark. And usually that mark tends to be kind of black looking. You'll have a black spot on your tongue or you'll have a black circle on the inside of your cheek or maybe on your lip. That's not too unusual, and it usually goes away in a day or two. Now, if you find one of those black spots in your tongue, your inside of your mouth, or maybe on your lip, and you haven't bitten yourself, that's another story. You need to pay attention. Now, for me, that's a red flag. It's telling me that my platelets are very low and that I should get a platelet count.

Some of you have experienced blood blisters on the inside of your mouth. If you haven't, you will know it because your tongue will find it. It's going to feel very strange and you'll run to the mirror because what it is it like a very small sack on the inside of your cheek that's filled with blood and it will look either black or dark dark red. This is something you really need to pay attention to also because it's a sign that you are spontaneously bleeding in your mouth. That's a mucous membrane. Sometimes a black dot will appear on your tongue and that is a sign that you are bleeding. If this happens to me, I immediately take a trans-amenic acid, which my doctor recommends. Then I get a platelet count, and then I take it from there to see what his or her suggestions are.

But you really need to pay attention. So next time you see your hematologist or doctor, start a conversation with them and discuss what you should do if this happens to you. Because it's always better to be prepared and have guidance and know what to do than not, because then you might freak out and you don't need to do that. So, until next time, I'm wishing you lots of happy, healthy platelets.

Narrator

Thanks for listening to the PDSA podcast, Bruised but Not Broken, Living with ITP. Made possible by our presenting sponsor, Amgen. Special thanks to Gus Mayorga for composing our theme music. To see what's coming up, visit our website at pdsa.org and subscribe wherever you get your podcasts. Please share this podcast through social media with anyone who you think might benefit from the information and stories we share with the ITP and other platelet disorders community. As always, please speak with a healthcare care professional before making any treatment decisions, but know that pdsa.org is a wealth of information and resources to help you navigate life with ITP and other platelet disorders. Remember, you are not alone.