Jen Stansbury Koenig – HSCT Warriors Podcast (EP.18)

Welcome to another episode of Causepods! Today on the show we’re joined by Dr. Jen Stansbury Koenig, creator of HSCT Warriors Podcast, who is going to be defining for us what exactly autoimmune disease is and the role that hematopoietic stem cell transplants (HSCT) can play in the healing process. She discusses her own experience of being diagnosed with two serious illnesses, how she approached treatment and what it was that made her decide to start a podcast to advocate the cause for HSCT.

Jen talks about the strong case for this treatment, giving us statistics from clinical trials and shares some of the issues related to the drugs that are frequently prescribed for people suffering from autoimmune disease. We discuss the possible obstacles for patients wanting to receive HSCT treatment, including the resistance from the medical field and the reluctance of some insurance companies to cover the expenses. She also tells us more about her show and the people she typically interviews as well as the importance of having consistent support in championing a cause like this. If you want to find out more about this really interesting and potentially life-saving treatment, do not miss out on today’s show!

 

Key Topics:  

 

•    What HSCT stands for and what it is. (01:43)

•    How autoimmune disease affects the body. (02:53)

•    When Jen was diagnosed with multiple sclerosis and later on, lime disease. (05:03)

•    The motivation behind starting the HSCT Warrior Podcast. (07:55)

•    Dr. Bert’s clinical trials that prove the success of HSCT. (08:31)

•    The issues with using drugs to treat autoimmune disease. (10:25)

•    More about how stem cells function. (12:50)

•    The need for a hematologist, not only a neurologist. (18:06)

•    Why it might not be so easy to get HSCT treatment. (20:52)

•    What to do to get HSCT into your treatment plan. (22:38)

•    Some numbers on the prevalence of autoimmune disease. (24:30)

•    Why Jen decided on using podcasting as the platform for advocating HSCT. (25:46)

•    What the first season of her podcast focused on. (26:52)

•    Other people she typically interviews on the podcast. (27:29)

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Transcript

[0:00:02.6] MP: Hi and welcome to Causepods. I’m your host, Mathew Passy. Here at Causepods, we have one simple mission: To highlight the amazing folks who are using podcasts as a way to raise awareness for good causes. Whether it’s a non-profit they work with, a charity they support, a social justice campaign they are championing, a medical condition they are battling or someone who is just looking to make a positive impact on their local community, state, country or the world.

 

These are podcasters with a positive mission. Along with raising awareness for our guest’s favorite cause, we’re also going to see if we can raise some money to support their efforts. So make sure you check out the show notes for each episode at causepods.org to learn more about what they’re doing and how to help them achieve their goals.

 

[INTERVIEW]

 

[0:00:51.0] MP: Joining me today on Causepods, we are speaking with Jen Stansbury Koenig, she is the creator of the HSCT Warriors Podcast aimed at illuminating the invisibilities of autoimmune disease and then we get into a bunch of technical terms of what she does. I’m not going to butcher, I’m going to let her take it but Jen, thank you so much for joining us here on Causepods today.

 

[0:01:12.6] JSK: My gosh, thank you so much for the invitation. I really appreciate the opportunity to just talk about the cause and shine a light, right?

 

[0:01:20.5] MP: Right, well, I mean, this is great because not that you know, everybody who we’ve had on Causepods is a cause of unnecessarily intimate with or highly familiar with but you know, have a general knowledge and so I’m excited to really learn about something that I have no idea what it’s about at all. I’m really going to go on an educational journey here with you.

 

Start of by telling us, what exactly is HSCT?

 

[0:01:43.2] JSK: HSCT stands for hematopoietic stem cell transplant. As you know, we like to translate that into HSCT. It’s not easy for everyone to understand what that might mean but basically it is a bone marrow transplant or similar to what we know as a bone marrow transplant for autoimmune diseases. This type of transplant has, is backed by 40 plus years of research for cancer patients.

 

Particularly, multiple myeloma, leukemia and other tragic cancers of the blood. A hematologist or a blood doctor knows that this can work in terms of resetting the systems that are carried within the blood, carrying the messages or diseased cells and cancer cells. Twenty plus years ago, Dr. Richard Bert who is at North Western Memorial Hospital in Chicago Illinois left his research at Johns Hopkins, inspired him to try this out for autoimmune diseases because technically, it’s like a reboot, again, your blood that’s carrying negative messaging.

 

Autoimmune disease is basically a negative message that your body carries, telling your blood to attack itself. Rather than your typical immune system that attacks the virus or an invader, bacteria, with autoimmune disease, your body’s attacking itself.

 

Dr. Bert said, why can’t we use this reboot for autoimmune disease and basically wipe out all of the negative messaging carried by the blood of autoimmune disease. With chemotherapy, intense chemotherapy, obliterate that immune system, basically take your system to nothing.

 

You’re barely living but they pump you full of steroids in order to help you survive. But once the chemo knocks out that negative messaging carried by the T cells in your blood, you receive your own stem cells back to help your body build a new immune system or a reboot your immune system and carry new messaging that isn’t diseased with say, multiple sclerosis, scleroderma, lupus, rheumatoid arthritis, type one diabetes, on and on. There are 24 different autoimmune diseases that this procedure can halt, stop dead in its tracks and basically, your body learns to recreate its disease-free immune system.

 

The disease has halted in its tracks and you get to recreate a future for yourself with a new healthy immune system.

 

[0:04:18.6] MP: Now, in the original description that I got from you, we talk about the possibilities of a future free form disease progression. You talk about this as it is proven science. Has this been used and done with success in patients and by the way, I should also say, I apologize, you’re a doctor, is that correct?

 

[0:04:38.3] JSK: Thank you, I am, although, you know, I actually recorded kind of a clarification for that because I don’t want to come off as a medical doctor or mislead people to believe that I am a medical doctor. I am a doctor of education, yes, I have an educational doctorate in leadership but—

 

[0:04:56.3] MP: Either way, you did a lot of work and earned that title, I want to make sure we at least let the audience know that you deserve that credit.

 

[0:05:03.0] JSK: Thank you so much, because yeah, I was actually recently diagnosed the year that I started my doctoral program. Spent years all through my 20s just questioning what my issues were and understanding the pain that I was in, only to come to be diagnosed with multiple sclerosis.  The day before I found out I was pregnant.

 

[0:05:26.0] MP: Wow, that’s a lot of life changes in one small timeframe.

 

[0:05:30.7] JSK: Yeah, 2010 was a pretty heavy year and so in 2012, I finished my doctorate and in 2013 I started medication to treat that MS and just it sent me on a very fast decline. The weekend I started drugs, I was hiking five miles and didn’t have many problems, a couple of weeks later, I went up and did the sand dunes in Michigan and had been a very active individual leading up to this medication.

 

My doctor was like, there’s something else going on. I was like, well, you know, I have a diagnosis, I’m on meds, we’ll just see how it goes. But after a year, I was still getting worse and so I switched my MS drug and continued to get worse and so just knew that something else was going on, did more testing, found out I had lime disease as well.

 

[0:06:20.4] MP: My god.

 

[0:06:21.5] JSK: Which mimics MS, right? There was just this like perfect storm going on in my body and by the time I found a lime disease in 2016, I probably have irreversible, physical disability kind of damage that I’m dealing with and continuing to try to heal but I believe in neuroplasticity.

 

When I found this transplant, I thought, you know what? There is research behind it and it was in clinical trials and I just saw it as that possibility to end things to end the suffering once and for all and at least get that chance at a new chance at life, right? Because I missed my active self.

 

I still miss hiking five plus miles without skipping a beat and certainly would like to enjoy those kinds of activities with my daughter but right now, I’m, let’s see, 14 months’ post-transplant and still working on regaining that physical ability, walking is still an issue for me and so that’s part of the motivation I think behind starting this podcast because the more research I do into HSCT and what it can do for people, the reality is, that the sooner that you can access this treatment after diagnosis, the better off you are not just through the procedure, in minimizing complications but also on your chances at recovering and not being permanently disabled.

 

When I was laying in the hospital bed, listening to podcasts for my own entertainment, I thought, why not use this platform to get the word out to more people. Move the conversation beyond social media and to the world of podcasting.

 

Yeah, my goal with the podcast really is to help more people understand the personal experiences behind HSCT, gain access to the research and knowledge that’s out there because this is a very well researched procedure that needs to become a standard of care.

 

Dr. Bert recently published his findings of his last clinical trial and the Journal of American Medical Association, what is that, JAMA, what is that, just published in January of 2019. His findings that evidence 93% of patients that undergo HSCT show within one year, no evidence of disease activity.

 

[0:08:56.0] MP: Wow.

 

[0:08:57.3] JSK: That’s tremendous.

 

[0:08:58.6] MP: That’s incredible.

 

[0:08:59.5] JSK: Drugs cannot compete with that. Because it is a clinical trial and insurance companies like to label it as experimental and so some insurance companies cover it but others refuse because they declare it as experimental and say there’s more research needed and there’s just not enough proof except that it’s – I mean, studies in Canada are the same thing.

 

Dr. Bert’s publication was the first randomized multi-site international study to close like basically he’s got five years’ worth of follow up in research. So that it’s not just within that first year, I think it’s – maybe it’s 97%. We should check those stats.

 

[0:09:44.9] MP: The fact that the beginning of that number starts with a nine is just incredible. I mean, that’s—

 

[0:09:51.7] JSK: Drugs don’t come close.

 

[0:09:53.4] MP: No, you know, what you experienced in your own treatment and your own journey through this was that it wasn’t slowing down and you know, you have certain aspects of this that are irreversible now but if people can—

 

[0:10:08.8] JSK: Get access sooner, yes.

 

[0:10:10.6] MP: Right, early diagnosis, they could probably have, I would like to believe a complete remission of something like this.

 

[0:10:15.5] JSK: Absolutely. We don’t like to say it’s a cure but it’s as close to a cure out there than anything I’ve seen. You know, you talk about drugs who they give you a chance that they might slow progression if they work for you, right? Because as we know, drugs contain chemicals and they have to work with your own chemical makeup and your mitochondria and the way your body works and drugs don’t work for everybody.

 

They do work for some people and they do slow things down, and some people can enjoy years without disease activity or noticing their symptoms but—

 

[0:10:55.6] MP: But they probably also have other side effects and—

 

[0:10:58.1] JSK: Absolutely.

 

[0:10:59.5] MP: They probably, as you said, if they work, so you probably are delaying potentially other treatments that are going to work while you're taking time to see if this first round of treatment is going to work.

 

[0:11:08.5] JSK: Correct. Yeah, side effects aside, taking the risk of a drug not working for you and the disease progressing and invoking permanent damage seems just as risky if not more so than taking a chance on HSCT which is a significant medical procedure. I mean, you’re talking, let’s see, five to six rounds of chemo for MS to treat other autoimmune diseases, the protocols are slightly different.

 

You know, six intense days of chemo that nobody likes to undergo chemo. I mean, it runs for almost 12 hours every day first five days in a row and you know, it’s brutal but you’re on steroids and you’re on anti-nausea meds and you’re getting fluids and so really, it’s very tolerable. I personally experienced very minimal side effects and complications. I had a healthy diet going into it, I had a very healthy mindset which is another critical component of I think this whole journey.

 

It’s just staying positive and not getting down on yourself or the situation and I think that’s an approach I’ve taken since the very beginning, being diagnosed the day before I found out I was pregnant, you know? Once I found out I was pregnant, I thought, well gee whiz, now all I have to do is focus on being healthy and that’s just been my mantra.

 

[0:12:33.0] MP: I want to ask because I think the phrase “stem cell” is you know, somewhat politicized and a loaded phrase.

 

[0:12:40.3] JSK: Absolutely.

 

[0:12:41.3] MP: I imagine that that’s a major hurdle into getting more awareness and more penetration into the medical community to accept this kind of treatment?

 

[0:12:50.5] JSK: Absolutely because the stem cells – your body generates stem cells all the time. If you are injured your body takes a scan and says, you know what? We need more platelets. We’re going to tap in the bone marrow, send those stem cells out into your blood stream and those stem cells, they decide to become platelets and suddenly, you’re clotting or you’re healing a wound that your body has this magic inside of it all the time.

 

In order to generate and harvest enough stem cells, to then transplant back. I did take like a Neupogen injection to generate more of those stem cells in my bone marrow. But it’s the same procedure, process that you undergo for say, bone marrow transplant.

 

If somebody wants to donate bone marrow to another individual or to their child who has leukemia, same thing, they’re taking these exact same drugs to generate the bone marrow out of the stem cells out of your bone marrow.

 

It’s something that your body’s doing anyway and the idea of transplant really is misleading because HSCT is really about the chemo as the therapy to obliterate that negative messaging of autoimmune disease and the transplant of your own stem cells back to you or return of stem cells back to you. It’s just to help your body recover quicker and develop a brand new immune system quicker that’s free from disease.

 

[0:14:21.8] MP: You referenced bone marrow and donation. Is this something that people are donating to help others with or the last part, you said it kind of made it sound like it’s your own internal systems.

 

[0:14:36.3] JSK: It is, there is autologous HSCT which is your own stem cells and then I can’t remember the name for when you have to get it allogenic, I think, is based on donations from others. Ideally, HSCT for autoimmune is dependent upon your own stem cells. As far as I know, there could be research out there going on because there are clinical trials running in Denver and Seattle Washington, there is a clinic opening in Boston over the summer. I heard there’s a new clinic developing in Louisiana, Cincinnati actually, close to where I am, there’s hematologists at the University of Cincinnati who are looking to provide this to new patients with autoimmune disease.

 

It’s the up and coming thing. I think the fact that you’re using your own stem cells minimizes the complication that might come with—

 

[0:15:32.8] MP: Donated.

 

[0:15:33.4] JSK: Grafting, well yeah. Because when your body receives something for him, it takes longer to recover and the whole point of this HSCT is to literally obliterate that existing immune system that carries the disease. They’d give you a dose of chemo before they harvest your stem cells just to kind of knock down the active immune system that carries that negative messaging.

 

And then you’re giving yourself these injections to produce stem cells over the course of seven to 10 days after that first dose of chemo. Your body’s creating these stem cells and the idea is to harvest them before they become tainted with the autoimmune disease messaging, right?

 

They look to harvest at least two million stem cells in order to give your body that best reboot. They harvested 8.75 million from my body and others have been able to generate more than 20 million stem cells.

 

Whatever you can generate, they’ll give right back to you. The more you give back, then you’re just – it helps your body recover quicker, right? It’s interesting to be in the hospital at that day zero which is when your levels are too low to count. My platelets, my hemoglobin, my lymphocytes, my red blood cells, white blood cells, that gets all so low, literally too low to count, that’s what we call day zero when you get your stem cells back.

 

That’s a process that takes maybe 15 minutes for them to just run through just like you’d be getting an infusion of platelets or an infusion of anything really. Doesn’t take any time at all and you just let your body rest and adapt and give your body the space to do what it does best which is heal itself.

 

[0:17:26.8] MP: Wow.

 

[0:17:27.3] JSK: It’s really a transformational experience.

 

[0:17:31.7] MP: Again, right now I think it has a lot of not to sound degrading but it’s like, a lot of big, convoluted words that are tough to pronounce, that to a lot of people—

 

[0:17:41.9] JSK: Tough to understand, right.

 

[0:17:42.3] MP: Right, tough to understand, that don’t mean anything, it’s a simpler solution than how it’s described and so it almost feels like HSCT almost needs branding help. I feel like – I’m not sure if that’s necessarily one of the original goals of what you were doing with the podcast but I imagine that you are accomplishing that by talking about it, by sharing these stories and by giving others to talk about it.

 

[0:18:06.3] JSC: Right because something else we have come to just actualize is the reality that for so many patients who are diagnosed with autoimmune disease, the diagnosis comes after basically displaying a certain set of symptoms, right? You meet a checklist of symptomology and a lot of that tends to be neurological. That is the impact or the outcome of the disease having done it’s work on you.

 

But when you think about how your body carries the message of autoimmune disease in the blood and it is actually a blood disease and something that the hematologist would be more of an expert in understanding and treating than a neurologist, but when you’re only hooked up with a neurologist because that’s how your symptoms are presenting and you try to talk to your neurologist about HSCT and they have no idea what you are talking about or they’re fearful.

 

Or they hear scary stories because they are not sure and when you think about also the fact that having gone through HSCT now I don’t need any medication. I don’t need any disease modifying drug, I haven’t been on a disease modifying drug since 2017 so almost two full years and that feels amazing.

 

[0:19:23.0] MP: Nice, I know, I’m sure.

 

[0:19:24.2] JSC: That feels amazing and so not to be nasty about it but the reality is that a lot of neurologist get kick back from drug companies. They give proceeds from keeping patients on these drugs and so why would they take time to learn more about procedure that basically they would end up losing patients if their patients go through this procedure and don’t need them anymore for every six month MRI and don’t need them anymore for ongoing drugs that may or may not help them. You know I don’t know many doctors who would be that motivated to look into HSCT and truly understanding it.

 

[0:20:03.4] MP: Well it is a shame that our medical system as a whole is not really focused on healing but it is focused, it has become a business and so you are right, when the patient is seen as a profit center the impedes isn’t necessarily, and to be clear, like I don’t—

 

[0:20:22.4] JSC: That is unfortunate, absolutely it is unfortunate.

 

[0:20:24.3] MP: I don’t think this represents every medical professional. There is certainly plenty of X amount of professionals out there who are fighting this kind of thinking and fighting this kind of mentality within the medical world but it is obviously apparent and it exists and it starts with the insurance companies too and it goes all the way to the top where it’s a big money business and when money is involved, priorities get diminished. The right priorities get diminished.

 

[0:20:52.3] JSC: It’s definitely muddy waters in this country but also other countries. You know I just today released an episode featuring Alison Coats whose husband was diagnosed with MS in 2010 maybe, 2011. Anyhow, he had a really rapid aggressive form of the disease as well and was experiencing a lot of significant downward spirals and once they found HSCT as an option they really have to fight tooth and nail in order to get it, receive it in England where they live.

 

And had to do a lot of fund raising because they were convinced they are going to have to go to Mexico in order to get the treatment and eventually doctors came around and he was able to receive treatment in the UK and so they have used their left over dollars to develop the world’s first charity organization to help support and fund people to receive HSCT.

 

[0:21:49.0] MP: Wow that’s fantastic.

 

[0:21:50.0] JSC: So that is fantastic and it is a shame that the world has come to that but I mean we all know and we see it every day, these crowd funding campaigns for people to receive access to medical care. It is tragedy.

 

[0:22:02.6] MP: Oh yeah, I saw a stat the other day. The CEO of GoFundMe I think came out and said one third of all of their donation drives are for medical bills.

 

[0:22:12.5] JSC: I wouldn’t be surprised at all.

 

[0:22:13.9] MP: It is insane.

 

[0:22:14.8] JSC: And it is out of control.

 

[0:22:16.7] MP: Yeah, it is and it is unsustainable. So how does someone hearing this who either themselves have faced a diagnosis with an autoimmune disease or know someone or just interested, like how do they get the ball rolling to get HSCT into their treatment plan?

 

[0:22:38.3] JSC: That is such a great question, thank you for asking that because it is something we continue to advocate for on the podcast and it is interesting because it comes up almost in every conversation that I’ve had with people and it’s only been 16 episodes. Well, 14 aired and a few recorded and then I am still editing but it amazing that the best source of information on how to pursue HSCT exists on Facebook and I hate that that’s the answer.

 

I hate that that’s the answer. So many people ask their neurologist about it and their neurologist gives them misinformation or the wrong information because they don’t know enough about it themselves and part of what myself and a few vets, actually we are meeting tonight for another third meeting about how to start our own non-profit here in the States to get the word out, be advocates, go to clinics that are treating patients with autoimmune disease to give them more information.

 

Do personal presentations if we have to, really our focus initially will just be on that advocacy piece so that more people can get more information. Not everybody is on Facebook and that was another motivator of starting the podcast is how do we move these conversations outside of social media to the masses.

 

[0:23:56.4] MP: And so what we do on Causepods is we create a donation link for causes that we think are important to the host and so I know you’re working to establish this 501C3 and we will have a link in the show notes to this episode and we will encourage everyone who is hearing this who realizes that what Dr. Koenig, or as she is also commonly known as Zen Jen, is trying to do is worthy of your support and worthy of your donations so that people can help you out. So I want to—

 

[0:24:28.9] JSC: That will be so wonderful Mathew, thank you. I mean there is more than 24 million people in the United States alone suffering with autoimmune disease and the fact that or the idea that anybody out there is suffering when this procedure is out there as an option, it is just unforgivable to me. I cannot imagine.

 

[0:24:50.8] MP: It is equally unforgivable knowing that probably 23.9 million of those people are wasting money also on other treatments that are not going to do it.

 

[0:25:00.2] JSC: They are just prolonging their suffering. I mean yes, those drugs might work to offset symptoms for some time but eventually, you build up a tolerance to those drugs and they stop working. It might be only two years, it might be 10 years but eventually, the body is tired of fighting itself. HSCT gives your body a chance to live; generate a new sense of self.

 

[0:25:23.8] MP: So normally we focus mostly on the podcast itself but I am glad that we have spent so much time to learning about HSCT but I do want to talk just briefly about the show itself and you explained that while you’re in the hospital getting treatments, you are listening to a lot of podcasts and then you had thought that this might be a good way to get the message out, but why in particular do you think podcasting is an effective way to spread the word?

 

[0:25:46.3] JSC: Well it is free, right? And it is an alternative media source that isn’t bound by traditional rules. We are all making it up as we go and because HSCT is scorned in traditional media or medical settings, I felt it’s only appropriate to help promote the advocate – well help to advocate for HSCT in a non-traditional platform, something that isn’t bound by somebody else’s rules. It is tough to invite people to be vulnerable about their experiences and their transformation that they experience with HSCT and so not being in a traditional media platform maybe feels a little safer for people to be able to share their stories.

 

[0:26:35.8] MP: And so like you mention you talk to folks who either themselves have gone through HSCT or a family that have gone through HSCT, you talk to experts in the field about HSCT and the benefits of doing so.

 

[0:26:50.5] JSC: Not yet, well I want to. I am just getting started. The first season really focused on veterans, we call ourselves of HSCT. So people that have gone through it themselves and this new season that just launched, this is our third week, third episode today actually, it includes caregivers, people who are taking care of, because that is a unique role in and of itself, and an important one that should not be discounted. I want to interview my daughter, she is not really agreeing to it yet and that’s okay.

 

[0:27:23.7] MP: How old is she now?

 

[0:27:24.5] JSC: Finding a space, she is eight years old now.

 

[0:27:26.6] MP: Yeah that is a good age.

 

[0:27:29.5] JSC: Right, but we’ve also interviewed hopefuls. So last week’s interview with Katie, she’s geared up to go next week, well in March to start and thankfully, she made the connections early with somebody who went through HSCT who lives nearby and they actually have a much earlier relationship because Anna was Katie’s physical therapist when she had a horrible relapse and was in the hospital for her three-day steroid treatment.

 

Anna who was providing her physical therapy and treating her they both came to find out we share the same diagnosis of MS and stayed in touch over the years and Anna actually celebrating her two years stem cell anniversary this week and hopefully, she’ll find that she has no disease activity as well and after being on disability for almost those full two years and not being able to work, she was recently re-certified as a physical therapist is now working again part time at the Cleveland clinic.

 

As a physical therapist because HSCT stopped her disease and she’s experienced healing to the point where she can now treat patients again and get back to work.

 

[0:28:47.6] MP: Awesome.

 

[0:28:48.3] JSC: It’s amazing. It is amazing the possibilities of HSCT and our body to heal itself. We just have to give it the chance.

 

[0:28:57.0] MP: Yeah, that is incredible. So the show is called HSCT Warriors Podcast. You can find more about it at hsctwarriorspodcast.com. You can find the show on all the usual platforms. As always, we are going to put a link to the show in our show notes and again, more importantly like yes, listen to the podcast, subscribe to the podcast, tell people about it, get them interested.

 

[0:29:23.6] JSC: Especially if they have autoimmune disease.

 

[0:29:26.1] MP: Especially if they have autoimmune disease, we want you to be listening and know that there is a community of veterans as you put it that are out there that are supportive, that are willing to help but really more importantly, listening to this. I hope everybody takes this away, this is a cause that needs all of our help. So if you have the resources, if you have the education, if you have the knowledge, if you yourself have connections to the medical community, where you can help to spread the word and let people know that this is something worth checking out.

 

[0:29:57.5] JSC: Yeah, invite us for a conversation. Invite us for a presentation, we’ll show up. I’ve got people on the crew that have experienced lupus, CIDP, scleroderma, multiple sclerosis being almost the most common, you know possibilities are endless and we appreciate your support and your advocacy of all that we are trying to do. It takes a village.

 

[0:30:21.0] MP: Yeah, no I have certainly learned in my experience of non-profits and in talking to so many incredible people who are using this platform to help good causes and to help good non-profits that yeah, nobody can do this alone and even if this isn’t your cause, it is easy enough to lend your voice to spread the word because there is an excellent shot that even if you personally, directly, direct family aren’t dealing with someone with autoimmune disease, you probably know someone who is.

 

And they are probably in the dark about this kind of treatment and this kind of advocacy on their behalf. So again, it’s hsctwarriorspodcast.com for now. We’ll have a link at causepods.org to all of this if you would like to connect with Zen Jen, Dr. Koenig directly, it’s zenjen@hsctwarriorspodcast.com and Jen, I just want to salute you for what you’re doing, for the incredible strength that you are showing and in talking to you. You are very fortuitous. You are very strong and I think this cause needs an incredible advocate like you, so.

 

[0:31:39.9] JSC: I appreciate you saying so and I do have to say I cannot do it alone and have not been able to do this alone. I’d be a fool if I were to not give a shout out to my audio guru and very good friend, Billy Alletzhauser, he is an amazing musician, super talented and he helps my show sound good on less than a dime and I just appreciate him so much and all that he’s doing out of the kindness of his own heart to help us sound good and get onto a platform that hopefully more people can hear the opportunities that HSCT provide.

 

There’s a chance of getting your life back and it’s a chance that shouldn’t be passed up by anyone who is suffering with autoimmune disease.

 

[0:32:23.9] MP: And I am glad you brought him up and I am glad you are giving him that credit because it highlights exactly what we were just talking about that you don’t have to be a doctor, you don’t have to be a medical professional, you don’t have to be a tax lawyer with expertise in 501C3s. Good causes, good charities, good advocacy needs good people and so in this case, Jen got someone, a good person who could help her with a podcast.

 

This doesn’t sound like someone who has any of the other traits that would normally be associated with an autoimmune disease advocacy group but he used his talents to help Jen spread the word and I think there are a lot of folks who are hearing this who maybe will take a second thought of how they could help a cause like this. Of course, if you are hearing this one in particular you would like to help Jen’s cause, but you know.

 

[0:33:14.9] JSC: Thank you, all right. It’s grass roots you know? And I love your mission at Causepods to help shine the light on all the good work that is out there. I am trained in non-profit management myself and have taught courses and non-profit program evaluation at the graduate level and you know, non-profits are a passion of mine as well and to be a part of a movement that is truly good people coming together for a good cause, I really appreciate the opportunity to be here talking with you.

 

[0:33:44.9] MP: Well I think we’re going to have to have you back on again to talk about that part of your world in particular, how other groups could use podcasting to accomplish some of their goals but it has been truly an honor to chat with you. We’ve been talking to Dr. “Zen” Jen Stansbury Koenig. The show is HSCT Warriors Podcast. The website is hsctwarriorspodcast.com, for the HSCT Warriors Podcast you can find them on Instagram, Facebook, links to all of that will be available in the show notes to this episode and Jen, I just want to thank you so much for giving us some of your time here on Causepods today.

 

[0:34:21.4] JSC: Thank you kindly, I do appreciate it and can’t wait to talk to you again once we got our non-profit up and running.

 

[0:34:27.8] MP: And to that point that Jen just made, they don’t have the non-profit itself up and running just yet and so they can’t exactly accept donations but what we’re going to do a little bit different from other episodes of Causepods is we are going to put a link to Jen’s PayPal account that is associated with the podcast and so if you want to support what she is doing, if you want to help them grow the show, get this 501C3 launched like everything that would be of value to them.

 

You can send them some funds now. It is not going to be strictly counted as a donation in terms of tax census and things like that but they could use your help, they could use your support. So if that is something you’d be interested in, we’ll put a link in the show notes to the PayPal address and you can connect with her there but as always, we just want to remind you, the show notes at causepods.org with the link of the organization, the link to the podcast, the link to this PayPal address.

 

That you can help Jen and her efforts to raise awareness and to get this 501C3 off the ground and just learn more about HSCT and how we can get people treatment and the care that they so deserve. So Dr. Jen Koenig, thank you again for joining us here on Causepods today and we look forward to having you back.

 

[0:35:44.0] JSC: Thank you so much Mathew.

 

[END OF INTERVIEW]

 

[0:35:46.8] MP: Thanks for listening to this episode of Causepods. Again, if you’ve been inspired by the work of our guest, please check out the show notes in your podcast app or causepods.org. There you will find links to their work and a special donation link set up to support their favorite efforts.

 

From there, you can also follow and subscribe to the show on Apple Podcast, Google Podcast or wherever you enjoy your podcast and remember, if you have a Causepod and want to join me for an interview, please check out Causepods.org and fill out the interview request form. If approved, we’ll schedule you for a chat and share the amazing work that you are doing with the Causepods audience.

 

Thanks again and see you next time on Causepods.