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How PDSA's Board Helps Shape the Future of the ITP Community
57 Plays2 months ago
In this episode of Bruised but Not Broken: Living with ITP, host Barbara Pruitt is joined by PDSA leaders Peter Pruitt and Derek Zimmerman for a behind-the-scenes look at how the organization is run and why strong leadership matters to patients. The conversation explores what a nonprofit board of directors actually does, how PDSA has grown into a trusted advocate for the ITP community, and how lived patient experience helps guide advocacy, research, and long-term impact—offering listeners insight, reassurance, and a deeper understanding of the work happening on their behalf.
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Transcript
Introducing the Cause and PDSA Podcast
00:00:00
Speaker
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 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.
00:00:20
Speaker
And you think to yourself, well, that's an organization that I want to be a part of.
00:00:29
Speaker
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?
00:00:43
Speaker
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.
Hosts and Guests Introduction
00:00:57
Speaker
Here's your host for this episode, Barbara Pruitt.
00:01:08
Speaker
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.
00:01:21
Speaker
It's especially true when you're dealing with medical issues, as we all know. but Regarding a non-profit like the Platelet Disorder Support Association, do you really know what a non-profit is or how it works?
00:01:38
Speaker
How is it governed? What is a board of directors? 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.
Peter and Derek's Backgrounds and Diagnosis Stories
00:01:51
Speaker
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.
00:02:05
Speaker
So welcome, Peter. Thank you 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.
00:02:20
Speaker
Well, why don't you introduce our second guest today? I'm going to give you that privilege. Okay, we're joined today by Derek Zimmerman. Derek's been a fellow board member for the PDSA since 2018.
00:02:36
Speaker
Derek graduated from Stetson University with a business major and then got an MBA from 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.
00:02:57
Speaker
Thanks. I appreciate it 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?
00:03:14
Speaker
Sure. So in late 2003, that's when I was diagnosed with ITP. It was off of a ah routine blood test for me.
00:03:25
Speaker
and My platelets were about 20,000. At that time, i had never heard of ITP right and i wasn't more familiar with it. I had mentioned to my hematologist that ah that I didn't know a lot about it and you know what kind of stuff and and and what's the prognosis. And he went over some of that with me, but he mentioned there was a couple 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.
Derek's Treatment Journey and Community Impact
00:03:57
Speaker
That year it was in Baltimore in 2004. 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 had um been involved with PDSA.
00:04:11
Speaker
How long did you have ITP since your diagnosis and your first conference? How long was that? i was diagnosed in December of 2003. And the annual conference was probably in July. i know we do it in July now.
00:04:26
Speaker
So I would say, what, roughly seven months. Okay. Okay. I was on steroids that whole time. They were tapering me off, but as I would taper, i my 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, got a lot of good information out of it. But the the organization was still fairly young and and quite a bit smaller at the time.
00:04:47
Speaker
Then after that, within a few months, I was tapered off. I had a remission of about five years at that point. Um, so I didn't really come back to any other annual meetings, but then when my platelets dropped, the next time they dropped up pretty much zero, they checked me into the hospital.
00:05:07
Speaker
And, um, then we started coming back to the meetings to start gathering some more information and find out if there was any new treatments. Cause when I was initially diagnosed, it was a lot smaller group of treatments. I think it was like steroids, wind row, and maybe get your spleen out.
00:05:23
Speaker
And, uh, We were trying to avoid the spleen. So then when I came back, we started, i wasn't getting remissions anymore. So we knew that I would be more involved. with ITP on a day-to-day basis.
00:05:34
Speaker
And um I was able to call PDSA and Caroline Cruz 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.
00:05:46
Speaker
I 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 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 um
Empowerment and Community Support for ITP
00:06:06
Speaker
some fundraising. So we did a little bit of that and just got more and more involved as the years went.
00:06:12
Speaker
So at the conference, you must have walked away feeling a bit empowered knowing 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.
00:06:29
Speaker
ah 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 i tried... um ah There was a couple of treatments we tried. I think I think Danazol or something like that was a hormone replacement. And we tried Rituxan, which worked, but I had a ah 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, kind of made me ah more confident.
00:07:00
Speaker
Yeah, it gave you hope at least. Yeah, it did. I think the other thing that the conference did was, you know, in 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 it's not the most common of disorders.
00:07:17
Speaker
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, i and I didn't realize that i wasn't I mean, I'm even sure what the prognosis is going to be long term. Right. So those kind of things made you confident.
00:07:41
Speaker
Yeah. Connecting with other patients is something that I think is so important for a patient going through i agree a diagnosis like this. 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 what's your feelings toward that?
00:08:01
Speaker
Oh, that's interesting question. um I can see that. Yeah, I would say I could see that with some people. 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.
00:08:16
Speaker
And I think the only way to find out that information a lot of times is to, i guess, reach out. I think I felt like There was obviously research online I could do. 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.
00:08:32
Speaker
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 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?
00:08:54
Speaker
I think mentally it would be hard for me to let that go until I do more of those kind of things. You were searching for answers and this was a way you could get the information that you were seeking.
00:09:04
Speaker
Absolutely. Yeah. I think that's an important perspective, you know, when you're dealing with something like this. 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 ah 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.
00:09:23
Speaker
And did you find like a connection? it 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 so footsteps, aren't we?
00:09:36
Speaker
Yeah, I would agree with that. It's interesting because I would imagine every disorder or disease has that more personal component, but some are more known.
00:09:50
Speaker
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. Right. You know, we mentioned it to people and no one else had any 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. 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.
00:10:20
Speaker
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 great.
00:10:40
Speaker
I think it does. And I'm not sure, like, if i necessarily 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.
00:10:54
Speaker
And ah 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. But um 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 ah 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 and stuff you can find
Leadership and Financial Strategies at PDSA
00:11:26
Speaker
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 I think is a strength of PDSA.
00:11:41
Speaker
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.
00:11:53
Speaker
Well, Peter, tell me, no 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?
00:12:10
Speaker
Well, well I guess it kind of started a little bit when Barbara, when you first found PDSA, which was probably in about 2003, maybe. Yeah.
00:12:24
Speaker
Roughly. Probably. Right. um you had And you've told this story, I'm sure, on your podcast, that really had never met anybody else with ITP. One night when you couldn't sleep, you found, know, as 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 and immediately said, I'm going to get very, yourself, yeah I'm going to get very involved in in the PDSA.
00:12:51
Speaker
And you did, ultimately became a board member. And ultimately, as I recall, you were the chair, correct? right 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.
00:13:09
Speaker
and run the audit practice for the firm I was with, Deloitte. And we were both like, 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 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, were on the board, then you became the the chair.
00:13:34
Speaker
And so we went to d c And then, however, at the time, you were in of the original, one the first two TPOs came out in clinical trials. One followed after you tried them both.
00:13:47
Speaker
which had a really significant impact on your general health. You just didn't tolerate them well. we had a lot of side effects. You were just pretty worn out.
00:13:58
Speaker
Right. The bad fatigue, you had really bad fatigue. At the same time, At this point in time, the founder of the organization, who many of you may on the point podcast may have heard of, Joan Young, who founded the organization, had had decided to retire.
00:14:13
Speaker
And you had gone through a search process and found a successor to Joan. So you ended up having to to step down as chair. And the prior chair, Matt, took go came back in as chair.
00:14:29
Speaker
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.
00:14:42
Speaker
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 in my office home. and you walk in and you said, I need you to do something for me.
00:15:03
Speaker
And I said, what is this? forget And you said, I need you to be the chair of the PDSA. And of course I said, yeah, honey, anything you need me to do. Now, why me? Right.
00:15:20
Speaker
And you had obviously thought this through, talked to Matt, talked to the board about this, because I had chaired number, chaired, been treasurer a number of large, fairly large not-for-profits. Most well-known to 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 other fairly large So you knew I was pretty pretty well-versed in corporate governance as well as had been are involved with well-run not-for-profits as well as all the other clients and my role as an auditor I dealt with. And that was what you felt was needed at the time. Exactly. Was somebody with a business background to come in.
00:16:05
Speaker
Right. Exactly. 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 history and that could run the organization from that standpoint.
00:16:26
Speaker
And that's why I twisted your arm and you gave in, fortunately. Yeah. And so that was 17 years ago, right? Until just recently, um at the beginning of this year, Derek seceded me as as the chair. And and we've come a long way since then.
00:16:47
Speaker
And just to give some history for those here, at the time, I joined as chair. made, 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.
00:17:04
Speaker
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. We asked her to be the interim chair. Oh. Which she agreed to.
00:17:16
Speaker
And then when the other board You know, when it fell through, we did ask her afterwards if she would step in as the chair. Not the chair, the executive director.
00:17:27
Speaker
Executive director. I'm sorry. Yes. Basically, Caroline and I came into our roles at the same time. At the time, I would say patient-facing stuff was still running pretty well.
00:17:39
Speaker
But financially and operationally in the background was not not good.
Pharmaceutical Partnerships and Patient Advocacy
00:17:46
Speaker
We basically had no money. And so the board and myself, we got to work on what do we need to do stabilize the organization and move forward. Now, the work was really not done by the board. And 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.
00:18:19
Speaker
And 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.
00:18:32
Speaker
And then things started to change. you know, the TPOs, about this point, you know, how the TPOs, she had these two new treatments. And little by little, all of a sudden, more and more companies became interested in developing Drugs for ITP.
00:18:50
Speaker
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 as opposed to, you know, like they had in the past. so so there a lot more effort was being put to develop drugs for rare diseases.
00:19:10
Speaker
So we began to see more and more drugs coming along. Well, also at the same time, there really was a big push. And i mean you saw that at the beginning at the early stages, Barbara, when they started wanting to hear the patient's voice. Right.
00:19:26
Speaker
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 wanted to hear the patient's voice. us 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.
00:19:55
Speaker
So even though it didn't work for me, it still needed to be available. 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 much more important in the process, the approval process. So the pharma companies realized we need to have, you know, even though we support in some way, we we need to have a much closer relationship with the patient support organizations because we need to understand patient voice.
00:20:24
Speaker
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. not that they didn't support us. They did support us. But now they needed us, which just changed the dynamics a little bit.
00:20:43
Speaker
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 to blossom. Yeah, exactly. Where and the most interesting way to describe it is,
00:20:57
Speaker
when When I would go to ASH so as as the chair, I would go to ASH, you know, along with Caroline. And 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.
00:21:15
Speaker
And then we'd spend the rest of the time at our booth meeting with doctors. Well, Derek experienced this this year going to ASH. Essentially, we were in meetings with pharma from the opening of 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 in development.
00:21:38
Speaker
Always interesting to us, and particularly as that we talk to our medical advisors about why that is, 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 development for autoimmune diseases, and many of these drugs work for multiple autoimmune diseases. i mean, there's a one we see on TV all the time that originally started as an ITP drug.
00:22:02
Speaker
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 determinant of efficacy. So the first place to start, if ITP is one of the indications, is do ITP first.
00:22:22
Speaker
And that has allowed us to go from 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 Yeah, it really is. When we go, and Derek experienced it this year at ASH, which was in dis December, 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.
00:23:02
Speaker
So that's allowed us to get to the point where today we have significant operating working capital. We have like plenty of cash for working capital. We have, oh gosh, I think almost $3 million dollars in our research fund.
00:23:16
Speaker
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 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.
00:23:44
Speaker
So it's been an interesting run. or the organization Well, one thing you touched upon is the advocacy of the patients in the organization.
Fundraising and Advocacy Efforts
00:23:55
Speaker
And I know that that has made a big difference and that has really blossomed. There's platelet walks all over the country and, you know, people are finding unique ways of raising money.
00:24:08
Speaker
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? Yeah, I would say beyond some personal donations and then ah getting a little bit of family involved, especially my parents,
00:24:27
Speaker
They've donated generously over the years. My wife, Sherry, is a runner. Runs half marathons, even the marathons. But she likes the half marathon.
00:24:38
Speaker
She used to do what was it, Leukemia and Lymphoma Society a fundraising. Then after I kind of had this ITP diagnosis, she was able to switch some of her running these races and raising money as she ran, i guess, kind of under the... ah pump it up for platelet type runs 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 or running and has done that over the years.
00:25:10
Speaker
ah That's probably the biggest like fundraiser type stuff we've done. And then i worked with a friend's foundation who donates to nonprofits and they were able to learn a little bit about ITP and kind of do an annual donation for that as well.
00:25:25
Speaker
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, a simple fundraiser, something that you're doing anyways, like Sherry's running marathons anyways, why not yeah use that as a modality to raise money for the PDSA? People can get very ingenious about that, which is great.
00:25:50
Speaker
Right. Well, ah her and, you know, her friends go running. 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 people will ask. People will be interested.
00:26:03
Speaker
Not only is it raising money, it's getting some more visibility out there. The awareness is important because when people recognize, oh, ITP, I've heard of that. You know, tell me a little bit more. It's it's interesting how more and more people recognize ITP or they've heard of it or they know somebody with it.
00:26:25
Speaker
So it always helps to spread the word. 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.
00:26:35
Speaker
And you still don't. But it is interesting because ah I'm not, 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 people have other immune disorders and you get to know each other kind of in 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, uh,
00:27:05
Speaker
Oh, my wife does too. And then we found out, oh, she has ITP. and I mean, I'd worked with this guy for a number of years. They 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 And that gives you like a whole nother personal side to what was really just a business relationship before.
00:27:24
Speaker
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. ah my 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 i 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 was interesting. So, yeah, when you do run into someone who has it, they're almost equally happy to find out they've met somebody with it. so
00:27:56
Speaker
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. Oh yeah.
00:28:07
Speaker
How do you think your experience with living with ITP is going to help you as far as being the chairman of the board? Right. So, I mean, I think the first way it helps is you are very personally involved and self-interest interested in the the cause, right? Because on our board members, we either all, 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 um and how you're going to move forward. Then when you get involved with an organization like PDSA, you see, hey, this is an organization that is advocating on the part of the patient. And that's important
00:28:54
Speaker
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 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.
00:29:17
Speaker
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 and trying to give back. 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
Leadership Roles and Board Responsibilities
00:29:40
Speaker
us. Yeah.
00:29:41
Speaker
Then I would say the other way it helps is, I mean, it's been why almost a little over 22 years for me. So I'm just, uh, Pretty familiar and experienced with a lot of the terms and where the organization's been, where the organization's going. And um 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 forward.
00:30:05
Speaker
And looking into the future, I know we all have hopes for the organization. What are your hopes for yourself and our ITP community?
00:30:16
Speaker
Oh, that's interesting. I guess 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.
00:30:30
Speaker
There's not a lot of ah reason to ah rethink 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 drugs and the research, but also there's the Washington, D.C. Hill Days that we've done in meeting with politicians in order to help the organization raise money that would directly go to research.
00:30:58
Speaker
and finding new treatments for maybe the people who haven't 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 hope to keep the advocacy moving in the same direction.
00:31:12
Speaker
And then I think the other big thing is we'll keep the finances strong. We'll always be responsible for that. Well, I have to say, i know that the PDSA was honored to get the stamp of approval from the charity navigator.
00:31:28
Speaker
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 you' and all the information on.
00:31:50
Speaker
And out of 100 rating, PDSA is rated 100. evidently- Yeah, that's impressive. so evidently that's massiveive very highly of the organization and how it's being run.
00:32:02
Speaker
So I think as a patient being a part or a member of PDSA, you can feel confident that it's it's doing the right kind of work for the patients.
00:32:16
Speaker
Yeah. And I think that score of 100 is a credit directly to a lot of the leadership, both that um Caroline provides and that Peter have provided. So all ah it's all care I'll hope that when I'm in there, we don't drop to a 99 or anything like that based on leadership rankings. You know, it's not easy to get. I mean, I know. I don't think so. You have to provide your tax return. they're looking at your financial health, financial strength.
00:32:41
Speaker
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 and whatnot so that that that to give to not-for-profits and charities look at Charity Navigator to make sure Oh, yeah, I've looked at it for a couple of other ones that we've dealt with, too.
00:33:04
Speaker
No, I mean, i think some of that is, 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 pull off what they pull off and how organized they are and the things that they can accomplish with a smaller staff means most of this money is going to research, advocacy, patient information.
00:33:27
Speaker
That's exactly the direction that you'd like to see. to continue to go in. Right. Well, I think the future looks bright with you at the helm of the organization there, Derek.
00:33:40
Speaker
Well, appreciate that. we'll We'll try to keep things going in that direction. Oh, i think I think you're the right person for the job. And I know my husband is 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. Derek wouldn't let me leave the board. No, no, no, no, no. That was my number one condition of doing this was making sure that ah Peter stays on the board.
00:34:07
Speaker
There's a lot of experience, history, knowledge, and other things that 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 as yeah 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. But ah that's going to give us an opportunity to um talk and meet as we need to. And I can glean some of that information off of you as we move forward in the direction that we're going to go.
00:34:35
Speaker
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 make all other members feel very confident in the future.
00:34:54
Speaker
I think so, too. I mean, I think another reason why, you know, not only was I willing to be taking over as board chair, 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 it's an impressive board. There's a lot of knowledge. There's a lot of good opinions when we have our meetings.
00:35:15
Speaker
There's a lot of good stewardship. and input and participation from the board when we have our meeting. 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.
00:35:29
Speaker
So i think it's impressive. That's great. right I think you've answered a lot of questions that people may have about a board, ah nonprofit board in particular, and also the future of the PDSA. It looks very bright.
00:35:46
Speaker
And, um, 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.
00:35:58
Speaker
I don't know that everyone realizes that. 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.
00:36:10
Speaker
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 um we appreciate that.
00:36:21
Speaker
We really do. I think the only other thing I want to mention too is I think one other reason that I like being part of this organization is the medical advisory board that we have is a such a world-class group of doctors.
00:36:36
Speaker
It's humbling just to work with them. And I appreciate that part of it very much as well. Absolutely. They are phenomenal. individuals and the work that they're doing for ITP is just incredible. Absolutely. So I think you're absolutely right. It takes it takes a village to get this machine running. So there's a lot of different parts and we appreciate your help.
00:37:01
Speaker
Peter, if you could, could you kind of explain what the board of directors job is? What is it that they do? sure 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 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 ah misunderstand what the role of boards are.
00:37:30
Speaker
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 run the company. So what boards do is they provide oversight of management. Essentially, we provide oversight of management.
00:37:47
Speaker
And the companies that have boards will have boards generally because there's owners who have no involvement in the company. They're owners, but they have really no direct line to management. So a board is put in place to provide oversight of what management does.
00:38:03
Speaker
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 half of the beneficiaries of our not-for-profit mission. That would be the patients.
00:38:18
Speaker
The membership. 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 than anybody who is a patient and has ITP or a caregiver, a but people who would be the beneficiaries of our mission, which is to provide information 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, the fisheries of our mission, or in a corporation where the shareholders may not be active in the business.
00:38:50
Speaker
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, a not-for-profit or company with stock, you have to have a board.
00:39:08
Speaker
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 really sets out all of what we're required to do as members of board.
00:39:29
Speaker
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.
00:39:44
Speaker
um 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 points, all kinds of things. And it's really in accordance with the state law.
00:40:00
Speaker
A lot of what we were supposed to do as boards is not really in those laws. It comes out of people who sued book companies and set precedents to what the role of a board member is and what does providing oversight mean.
00:40:15
Speaker
So what we do as a board is in providing oversight, again, we don't run the company. Management runs that. What we do is we meet regularly, quarterly in our case, right?
00:40:28
Speaker
We get briefed on The key things that occurred since our last meeting through reports from Caroline and the team, and that will cover financial results, might cover budgets, might cover marketing, might cover patient support activities. that It actually will cover all of these things at every meeting.
00:40:45
Speaker
Planned events in the future, like our conference. How's that going? and 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 it provide oversight of in addition to all those things that your bylaws require and getting periodic updates on what's going on.
00:41:12
Speaker
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.
00:41:27
Speaker
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.
00:41:44
Speaker
Why they're going in that direction? Is it achievable? Are we setting strategy that just is 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.
00:41:58
Speaker
Then the second thing would be is while we don't run the organization, we do have organization. what you would typically call an upper requirement of the management of a company, we have one personnel hired, and that's the CEO.
00:42:12
Speaker
The CEO is hired by the board. Everybody else in the organization, everybody works for Caroline, she hires, fires, evaluates, right? Again, she we might call it oversight of that. She'll brief us on how that's going, but we have one hire, and that's the CEO.
00:42:28
Speaker
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 Who can come up from the inside and who would run the organization if something happened to the CEO? All of a sudden, we think about succession planning. The other thing on the talent side, responsibly for the CEO or responsibly for their succession, is culture.
00:42:58
Speaker
and Culture is so important in an organization that Management is responsible for making sure that the culture is there, that it's consistent with our values as an organization.
00:43:11
Speaker
But what we need to know 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 a boarder, you're going to want to weigh in on that.
00:43:23
Speaker
Not that that's the case here. And understanding culture for us is not hard. We have a small organization. It's very easy to know how they interact and how they work. You get into big public company and you're a board member who meets business.
00:43:36
Speaker
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.
00:43:47
Speaker
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, 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?
00:44:07
Speaker
We have information. We have systems. They're made fairly simple for a small organization, but every company has cybersecurity risk, right?
00:44:18
Speaker
So what are the big risk areas? you know What is our brand? What could impact our brand? What are the key things that could impact our brand? 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 put brand and all. in Understand what the risks are and how management tends to respond to them or mitigate.
00:44:43
Speaker
That's kind of in a nutshell why we do it ah as a board. Now, we do pick our board and we put together a board that has different skill sets that allow us to do that, right?
00:44:55
Speaker
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. Our board is made up of Derek, who's got he's got he's got operational responsibility within a sizable engineering consulting firm. So he's got management expertise.
00:45:15
Speaker
Dale Painter provides one. He's an engineer by training, but provides very one important thing. He is in Canada. And one of the things that we have done is form the Canadian Patient Support Group.
00:45:29
Speaker
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.
00:45:40
Speaker
We have Bruce Prescott, who was a senior person with one of the big financial firms. So he's got deep market expertise. So I mentioned we have a large portfolio investments that we've been able to accumulate over the last wonderful years we've had.
00:45:58
Speaker
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've talked about, he's a lawyer. It's always great to have a lawyer because you never know. yeah You run into legal things even in not-for-profits.
00:46:15
Speaker
Then you have Leilani Fitzgerald. Leilani works for a um large managed care company provides insurance and that sort of thing in the medical world.
00:46:25
Speaker
So she has a lot of insight into that. We have Jennifer Grimes, who's a nurse, who was an emergency room nurse. So, you know, we put together a board that, first of all, has some connection to either has been patient or caregiver, or And so that's how we put the board together. So that's a little bit about what the board does, a little background on the board.
Conclusion and Lifestyle Tips for ITP
00:46:53
Speaker
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.
00:47:07
Speaker
So thank you for clarifying that, Peter. 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.
00:47:31
Speaker
So thank you. Happy to have done it. yep Thank you for having me. Love the PDSA.
00:47:41
Speaker
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.
00:47:57
Speaker
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.
00:48:10
Speaker
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.
00:48:21
Speaker
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.
00:48:38
Speaker
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.
00:48:57
Speaker
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.
00:49:08
Speaker
Some of you have experienced blood blisters on the inside of your mouth. If you haven't, um you will know it because your tongue will find it.
00:49:19
Speaker
It's going to feel very strange and you'll run to the mirror because what it is is like a very small sack on the inside of your cheek that's filled with blood and it will look either black or dark red.
00:49:34
Speaker
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.
00:49:47
Speaker
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.
00:50:02
Speaker
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 and discuss what you should do if this happens to you.
00:50:23
Speaker
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,
00:50:38
Speaker
healthy platelets. Thanks for listening to the PDSA podcast, Bruised But Not Broken, Living with ITP.
00:50:49
Speaker
Made possible by our presenting sponsor, Amjet.
00:50:54
Speaker
Special thanks to Gus Majorga for composing our theme music.
00:51:00
Speaker
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.
00:51:18
Speaker
As always, please speak with a healthcare 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.
00:51:35
Speaker
Remember, you are not alone.