Great Resources from The Dysautonomia Project with Dr. June Bryant, DNP, APRN, CPNP-PC and Cheryl Faber

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Jill Brook: Hello, fellow POTS patients and lovely people who care about POTS patients. I'm Jill Brook, and today we are interviewing a duo of wonderful women who are volunteering their time and efforts to create great resources for both dysautonomia patients and healthcare practitioners. Our guests today are Dr.

June Bryant, MD, and Cheryl Faber, Director of Education for the Dysautonomia Project, a nonprofit based in Florida that does a lot of amazing work that we'll talk about. Dr. Bryant and Cheryl, thank you so much for being here today.

Dr. June Bryant: Thank you so much for having us.

Cheryl Faber: Yes, thank you for having us. We're really excited to be here.

Jill Brook: So, I have long been a fan of the Dysautonomia Project mostly because of the book that you produced years ago for both patients and practitioners, and it was an incredible book because on one side of the book it would talk about dysautonomia in language that patients could understand and then the other side it was in language for practitioners [00:01:00] and it was incredible and I know that's just one of the things that you have going on and we'll talk about that all in a minute, I guess.

But I don't want to get ahead of ourselves. So before we talk about the Dysautonomia Project, do you mind just telling us a bit about yourselves and how you came to be volunteering with Dysautonomia Project?

Cheryl Faber: I have known Nate and Kelly Freeman for, gosh, over 25 years. They're the founders of the Dysautonomia Project. And almost 10 years ago, I started helping the organization on a part time basis and have just watched it evolve from this grassroots local initiative to this global reach that we have the difference that we're making with patients all over the world.

And so I've been with the organization from almost the beginning and became the Director of Education a few years ago. [00:02:00] So I'm, I'm on staff in that role and it's one of the most rewarding jobs that I have ever had. Still friends with the Freemans and we've grown, you know, to have staff, a large volunteer board, be able to work with wonderful providers like Dr.

Bryant, who are such champions for us. On the personal side, I have two boys. I've been married almost 30 years. I just, I love cooking and traveling and running and and volunteering. I just like to help people. So this is a perfect fit.

Jill Brook: And Dr. Bryant, what about you?

you

Dr. June Bryant: I started with the organization in 2019. I actually had a patient that I could not figure out the diagnosis for. And I wanted to clarify that I'm a nurse practitioner. I know you said MD, but I'm, I'm a doctorally prepared nurse practitioner, but I worked within a practice and I had a patient that was very, it was very frustrating for me not to be able to [00:03:00] diagnose. So, I wound up switching gears and I joined a local school district as one of their nurse practitioners on staff and the Dysautonomia Project came and spoke at one of our pre conference workshops and they were talking about dysautonomia and at this time I had found out the diagnosis after my patient had been through multiple specialists

to get to this diagnosis. And I was like, oh my gosh, there is education on this topic. I didn't get any of this in school. And so, that's when I walked up to them. I said, I need to, I need to be a part of this. I feel so strongly for this. And and I have, been with them and a part of it and a champion for this project and this initiative ever since.

Me personally, I'm also an assistant professor at University of Tampa, and I own my own mobile primary care practice in the community. And so those are the, also personally, my son has POTS, so that's, you know, another [00:04:00] reason that, that was actually diagnosed after I was involved. So, it was wonderful to be able to recognize the signs and help him early too.

So, I really love being a part of this organization and part of the mission.

Jill Brook: Oh, that's wonderful. Okay, so let's dig into the Dysautonomia Project. Can you give us an overview of your organization? Like, what is your mission? What is your origin stories? Who is your team?

Cheryl Faber: The Dysautonomia Project is a 501(c)3

non profit. We're based in Clearwater. And our mission is education. To educate healthcare professionals, patients, and communities about Dysautonomia, or Autonomic Dysfunction. And this is our 10th year. We started 10 years ago

because it took Kelly a very long time to figure out

what, what was happening. She went from being a [00:05:00] very

active mother, business owner, volunteer just extremely involved in her community, lots of energy. And then, she had a dental procedure and something went awry and everything changed and she was in bed for seven years and couldn't figure out what was happening and the local medical community was not able to help her.

So she began a journey throughout the country trying to get answers and when she finally found a doctor who was able to give her diagnosis and explain what Dysautonomia was, she and her husband and her mom did not want anyone else to have to suffer in the same way. And they thought education was the answer and the number one form of treatment.

That's one of our taglines. So in 2014, they started the Dysautonomia Project. No staff at the time. It was led by a group of board members and volunteers, and [00:06:00] we've evolved over those 10 years to having 3 staff members, myself as the Director of Education, Alexandra Key as the Executive Director, and Ashley Goforth as our Development and Events Manager.

And a board of a dozen people, a lot of, of great community leadership we've got wonderful collaboration with many providers who come alongside us to help support our educational efforts like Dr. Bryant does. And so

what we do, everything that comes our way, we always put it through that filter of education to make sure that we stay on that singular mission. And that alone keeps us extremely busy because we have a large number of programs that we do for providers and a large program that we do for patients and caregivers and we try to get out into the community as much as we can to spread awareness about what this is.

Jill Brook: Because you guys [00:07:00] do so many amazing things for Dysautonomia patients, and I'm excited to talk about the specific initiatives and programs and events, but I feel like maybe first, we should just establish what kinds of Dysautonomia are we talking about? So I know that my audience is, is fairly focused on POTS and some of us might not be as educated as we should be about all the other kinds of dysautonomia.

Like I think we all see that graphic of the umbrella, right? And we know that POTS is under the umbrella of dysautonomia and we see these other words, but what did those kinds of dysautonomia look like? What are those patients struggling with?

Dr. June Bryant: So, I mean, we, we focus on anyone who does have dysautonomia and whoever falls under that umbrella. It's not like we, we limit our focus to one. Now, because I'm a, I'm a pediatric primary care provider, so my focus is on those conditions that affect the pediatric population, which is heavily is POTS. I [00:08:00] mean, that really is POTS.

And of course, there are some like Familial Dysautonomia and Autoimmune Dysautonomias as well. Neurocardiogenic Syncope, all of those are like, is my focus when I educate just because that's my specialty. But anyone I mean, we can give resources, or we've are able to give information on anyone who does fall under that umbrella.

And, you know, it's so, as more and more research goes into it, we're finding many, many, many more conditions that are filling up this umbrella. Right? So, it's, and it's so wonderful that we have so many people looking into it now, rather than what we had, you know, 10 years ago, 20 years ago. So, very happy about that.

But to answer your question, like my, my education and my expertise is basically pediatrics.

Cheryl Faber: So, I, I, I know the graphic you're talking about with the umbrella, and it's one that we often refer to in education because it helps people really [00:09:00] understand what this is, you know, Dysautonomia is that umbrella term for any disorder of the autonomic nervous system, and POTS is the most common form, so that's why there's so much that's you know, talked about with it and with, with long COVID, that seems to be triggering autonomic disorders, you know, POTS symptoms and things like that, but there are many other forms of dysautonomia other than POTS and POTS or dysautonomias can cross over all age ranges, you know, they can be in pediatric and they can be in the adult age range, they can be in the geriatric age range.

So, so many different kinds. But what's interesting about POTS is that one in a hundred teenagers are impacted. And as Dr. Bryant said, you know, as a pediatric primary care practitioner, you see a lot of those patients in that age range or school age range or [00:10:00] college age range. You know, these 85 percent of them are female.

So that seems to be the most well known. So our education, some of it does focus on POTS, but we are getting more involved in education that really spans those other topical areas, especially when we do our patient and caregiver program in the summer, Dyscourse, we'd like to highlight different forms because so many people that tune into that have multiple things going on or multiple coexisting conditions along with whatever form of dysautonomia they have.

So we're trying to let people know it's not just POTS, even though that's what people have heard of the most. It's all sorts of other things too.

Jill Brook: Yeah, and are you noticing that there's a lot more of it since COVID?

Cheryl Faber: I mean, you definitely see more of it in the press. You know, more celebrities coming out saying I have it, or my child was diagnosed with it. In some [00:11:00] of the research articles, it seems to be showing up more that

long COVID is triggering some autonomic dysfunction.

Dr. June Bryant: And it seems like certain strains are definitely worse than others. I mean, we, of course, we know that with any virus, but it seems like we did have a lot of long COVID towards the beginning of the pandemic. And then now it seems like it's almost the strains of COVID that are going around now, it almost seems to be bringing it back because I have patients that are coming back and saying, Oh, you know, I really feel like I'm still tired from having this COVID three months ago.

And I'm like, Oh man, it's, it's probably, you know, starting to rear its, rear its head again. So I don't think that, I don't, I think we have a long way to go still with what we, what we need to learn and what we need to be educated about because it's not going away anytime soon.

Jill Brook: Well, that's such a good segue into the resources that you guys offer. So we've mentioned two of the things you do, your Dysautonomia Project book and the Dyscourse [00:12:00] event. Which one should we start with?

Cheryl Faber: Have lots of resources. Let me start with the book just because it, you know,

that's, that was the foundation of our education. When the Dysautonomia Project started, it started with Kelly

enlisting the support of two other physicians to write this book, and that became the educational tool. And like you said, it's, it's really well received because it's got the patient portion on the left, so it's in layman's terms for patient, and then it can go a deeper dive medically on the right side for providers.

So that book is still one that we use. So the second edition is actually in the works right now, which we're really excited about. It'll contain, you know, a lot of new information. It will say providers instead of physicians just because there are so many, so many different providers, in different specialties are involved in this patient's journey.

[00:13:00] So the book continues to be a foundation. It's on Kindle now. It's been translated into Japanese, and we've had other organizations coming to us wanting translations. So, so that remains, you know, a very strong piece of our education. We also do Dyscourse, like you mentioned. That is an annual virtual patient and caregiver program.

We did it in person a time or two, but what we've discovered with patients who have dysautonomia is it's often difficult for them to have the energy to stay for several hours and make the journey to a program. So it's all virtual. We provide topics that provide practical support and, and tips for patients in all sorts of areas.

We have specialists from the American Autonomic Society that also come in and do talks. So that is really popular. We reach lots of different countries and hundreds of [00:14:00] patients through that tool. We also do the first of its kind three day mini fellowship for medical residents in their second year and higher.

We are getting ready to do our third year. It's in January down here in Clearwater Beach. It's an in person event led by again, the world leading faculty and specialists in, in autonomic medicine. And I love that program. It's a lot of fun to do. It's, it's, it's really neat to see these residents express their interest in autonomic medicine and then come here in this intensive three day program and just learn from these experts and be able to take that back to their programs and disseminate that information.

When we first started that in 2023, it, the class was full with 36 residents, but it took a while to fill that course. We've expanded it now to 40 residents and the course filled up in two [00:15:00] weeks and we have a long waiting list. So that's, that's really exciting.

Jill Brook: How do you, how do you either get those residents to be interested, or how do you find the residents that are interested? Because it seems like in most of the world, there's definitely not 40 people clamoring to learn about this in any one area.

Cheryl Faber: Yes, so we, we, we reach out to every residency program in the country that is in the fields of Family Medicine, Internal Medicine, Pediatrics, Gastroenterology,

um, Cardiology and Neurology. And we, we just blast information in doses to them and we have, I want to say a third of the programs are returning.

And, you know, it's, it's really exciting. So we cross all those specialties. We have, it is pretty neurology heavy, but this year [00:16:00] we've got a really good mix of all of the different specialties. So, you know, that's really exciting. It's really exciting. We would have a resident coming from Australia this year.

We had two from Puerto Rico last year.

Jill Brook: My gosh, that's Amazing!

Cheryl Faber: Yep. So very exciting. And I'm excited to share that in January for the first time, we're running a one day concurrent program called the Clinician Program. That's going to be on Friday, January 24th. 2025 at the Opal Sands, just in a different ballroom and same faculty.

They'll just be kind of switching back and forth and Dr. Bryant is a part of that as well. And this is for practicing clinicians who want to learn more about autonomic medicine and hear from these world leading specialists. So we're really excited about that and that's something I want to heavily promote.

If anyone listening is a clinician or you know of anyone who would like to come, be an [00:17:00] MD or a DO or a nurse practitioner, a physician's assistant, physical therapist, psychiatrists, anybody involved in that, please go to our website and register for that. It's an excellent program and you're not going to find a one day program taught by

specialists like this anywhere else. So we're super excited about that. And then, you know, we have a lot of online resources. We have a very robust website. We have videos on there that we did in collaboration with the American Autonomic Society. There's over 60 videos, so you can learn from there. We have a patient assessment tool that's been created.

So, whether you are diagnosed or undiagnosed, you can use that tool to, to gauge your level of risk for Dysautonomias, or to track your symptoms. We have a [00:18:00] provider finder, so you can go on there and find someone in your area who is knowledgeable about Dysautonomias and can treat you.

Jill Brook: That's huge. I just want to, I just want to underline that for people because I know if you've been dozing off here, I know you're looking for a good specialist or a good provider in your area. I know I still am. It's not easy.

Cheryl Faber: It's not easy.

Dr. June Bryant: Tell you that is, that is one of the most, the best tools that I use in practice because not only that, the patient assessment tool, let me tell you how helpful that is with my patients that I, I know, like I'm like, okay, they're symptomatic, but they need validation, right? So they, they need something to say, yes, this is definitely it because so many of the symptoms are so subjective.

You know, a lot of, a lot of times they'll go to the provider and be like, Oh yeah, you know, yes, I'm dizzy. I'm, I feel like I'm going to pass out. I'm lightheaded. And, you know, most times providers are like, yeah, well, I've been dizzy once. It doesn't mean I have, you know, so just being able to send them to [00:19:00] this site, have them take this

patient assessment tool on their own time and then they send me the results and they're like look at my results. It's validating to them to have something that says yes, look you do screen positive for this, you should find someone to help you with your symptoms. It just having that is so amazing for my, for my patients that don't know where to go.

And so I just wanted to mention that if, if there's, are any clinicians or patients looking for something that to help validate them, that is definitely a great tool to use.

Cheryl Faber: Yeah, thank you. We were so excited to roll that out and and it really is a great tool, definitely. And, you know, we are constantly looking to increase the number of providers that are on that list because there are still so many patients that reach out to us regularly saying, I don't know where to turn, or there's nobody in [00:20:00] my city, or in my state.

So, you know, we're just trying to put as many feelers out everywhere to get that built up so that nobody has to go for years without getting help. Or, travel across the country, or be put on a year long wait list. So if you, if your listeners have a provider that, you know, that they really like, who is listening to them, who is helping them, please, you know, reach out to me directly.

Send me their information and we'll get them added.

Jill Brook: Oh, fantastic, yeah, and hopefully we have some providers listening also who want to be listed

and they can do the same I'm imagining.

Cheryl Faber: Absolutely. They can definitely do the same. Just reach out to us. Send us an email Cheryl at dysproject. org and we'll make sure that they get added.

Jill Brook: Fantastic, and I know that the videos that you have are really impressive, they're by top notch people. Can you talk more about [00:21:00] the people who are teaching these one day or three day seminars to educate providers? And I know that you're part of that, June. And so, like, what are those like? Who's there?

Cheryl Faber: Absolutely. So, Dr. Glenn Cook is, he's the head of the Autonomic Lab at Walter Reed Military Medical Center up in Bethesda. He's the course director for the Residence Course and the Clinician Program. The Clinician Program is the one day and the Residence Course is the three day. And he's been just a wonderful a medical advisor and champion of ours for several years now.

So we, we're just so grateful for his support. Dr. David Goldstein, he helped co author our book. He is a Senior investigator in Autonomic Medicine at the National Institutes of Health. Dr. Goldstein is almost like the godfather of autonomic medicine, I think, in the eyes of so [00:22:00] many. He's just brilliant. And, you know, just, such a, an amazing person.

Very fortunate to have his expertise.

Jill Brook: And so you guys have just reached out to these people and coordinated to create these programs and get them to volunteer their time. That's amazing!

Cheryl Faber: Well, it's been a lot of relationship building over the years. Kelly Freeman has, is just very well connected and very knowledgeable and she's introduced us to a lot of different people. Dr. Cook is, has really reached out to these other physicians like Dr. Goldstein and Dr. Robbins, Kelsey Kloss from Mayo and Laura Pace at Stanford and Howard Snapper, a cardiologist at WellCare.

And Dr. Robbins, who's up at Harvard, and just really brought everybody together. So Dr. Cook is, is like the, you know, the, the captain and, and we're just on the ship with him, thankfully, and we continue to build relationships in our local community, community as well. And we're [00:23:00] so fortunate to have the relationship that we do with Dr.

Bryant and. and her she's extended us an invitation many, many years now to come to her classes at University of Tampa. She is a medical ambassador of ours and, and is just a, an invaluable resource for developing content and programs. And she's going to be on the faculty at the Clinician Program as well.

She's so highly respected in, in this community and the faculty have just, you know, thoroughly embraced her and her credentials, and so we know we just continue to make relationships where we can. We're involved in the American Autonomic Society as members ourselves, and we attend the conferences and just try to keep those collaborative efforts going.

Jill Brook: That's fantastic. Now, you might have other, other resources that you want to mention. So I want to invite you to talk about any of those, anything we haven't talked about yet, but I'm also interested to know where the [00:24:00] heck do you get the funding to do all this? Who, who is, I mean, it's not easy. And so there's somebody doing some very impressive fundraising too.

Cheryl Faber: Yes, yes, we, it does. It takes a lot to put these programs on, and so we rely very heavily on, you know, individual and corporate donations and grants, you know, Ashley and Allie are brilliant grant writers, and so, you know, they, they're constantly reaching out and, you know, writing grant applications, and we've been very fortunate to have some wonderful grant awards.

So we're thankful for those, and we've done a beautiful gala each year that has been very fruitful and has allowed us to continue doing what we're doing. So those fundraising efforts

provide the resources for us to do all of [00:25:00] this. The Residence Course, the Clinician Program, Dyscourse, the Video Project, you know, on the web, that we have on the website, fund, you know, help us fund the second edition of the book, and the Kindle version, things like that.

The other thing that I, I do want to mention that we do is, in addition to all of those things, we will develop a customized program for whoever would like one. You know, it could be a physical therapist's office, or maybe it's we've talked about orthostatic vitals training for medical assistants.

We work closely with our medical ambassadors to do grand rounds, and to do Introduction to POTS or other programs at hospitals. We go into the local school systems and talk to the school nurses and do programs for them. We can go into free clinics and do programs. So it's very customizable to whatever that need is, and that's something that's a lot of [00:26:00] fun and Dr.

Bryant is a big help with us in that area, especially when we go to nurse practitioner professional organizations and do programs. We will also go to a lot of regional and national conferences, and we go as exhibitors and to hand out our book and other educational materials. And Dr. Bryant is a sought after national speaker at these events at the National Association of Pediatric Nurse Practitioners,

and, The American Association of Nurse Practitioners and the American Association of Emergency Nurse Practitioners, it kind of goes on and on. So we're, you know, we're really excited that she, that we get her, that she's ours and we get to work with her. And so she'll go and do these national presentations and we'll go along too as a team.

And yeah, so we just. Yeah, we really just try to hit every single corner and every niche. So if somebody's listening and you think, wow, I think it might be really [00:27:00] great to have you come in person if you're local or develop this virtual education for me. We're starting to work on that too. Reach out and give us, you know, tell us what you want and let us figure out a way to make that happen.

Dr. June Bryant: And it really is so exciting that people are reaching out to us and asking us for more information on this topic, which means that they are hearing about it, they are seeing it, they want, they are, they are longing for this education, and what a great place for us to be, for our mission to be. I mean, it's just, it's incredible going to these national conferences and then it just, even in, in, in the classroom, inviting, inviting them to talk.

Of course, I mean, I could talk about it, but it's, there's something different about having someone else in their normal faculty talk about something, you know? So when Cheryl comes to the class, there's always one or two students that come up at the end and say, I have this. My parents have this, my siblings have this, my best [00:28:00] friend.

It just goes on, and it's amazing seeing their light bulb go on, go, you know, come on, and it's just that, that's why we do what we do. And so, we're so thankful for the opportunity to do this.

Cheryl Faber: Yes, definitely.

Jill Brook: Wow, fantastic. Do you want to say anything more, drop any more little details or tidbits? We went over so fast, the Dyscourse program. Do you want to say what types of information you share for patients?

Cheryl Faber: So it, I'm looking up the date right now for next year. It is going to be, this is the first time it's on a Friday, Friday, June 6th. We don't have the hours pinned down yet, but it'll be throughout the afternoon. We're still lining up our speaker list, and we have some really exciting speakers coming, so I can't give them away yet until they're completely confirmed, but they're almost all confirmed.

But for example, you have been so [00:29:00] kind to accept our invitation to be a speaker on nutrition. That is one thing we've heard people say we'd really love to know, you know, as a patient with this form of dysautonomia or with POTS or whatever that is, what, you know, is there something nutrition wise that would help me, that I should stay away from, something that I should do, you know, it's a great, topic for practical tips.

Last year we had Dr. Larry Afrin speak about Mast Cell Activation Syndrome. That was wonderful. He, he was so great. And we had Dr. Cindy Harbeck Weber from Mayo Clinic talk about, from a caregiver's perspective, how they can be supportive. We had Dr. Will Fry he's a pediatric Psychologist or Psychiatrist from Johns Hopkins All Children's Hospital.

And he spoke about the mental health side of things. That was always very popular too, because there's a lot of [00:30:00] mental health challenges that come with this. It can be very stressful. A number of people that might, you know, consider suicide or, or harm, and, and we certainly don't want that. We want to give them tools and let them know that somebody is, is listening and, and able to help them.

Dr. Glenn Cook has been on before, on Dyscourse. He's given kind of a State of the Union, and here's some research that's going on right now, and here's hope, things that you can look forward to. So that's been, that's been really exciting. Yep, so we try to get a blend of maybe some technical topics on a particular coexisting condition or a specific type of dysautonomia to practical tips like Dr.

Weber did for caregivers or Dr. Frey does for mental health or the nutrition aspect. We also have a wonderful platform that we use for this virtual [00:31:00] program, so there's an opportunity for sponsors to come in and have a virtual booth and talk about different products that might be helpful for Dysautonomia patients.

Or other dysautonomia support groups or organizations that can have a booth and say, you know, we're out here too. We're, we're all in this together.

Let us know how we can help you. So they have that experience as well. And we also have question and answer periods at the end of each session. The sessions themselves are pre recorded.

But the nice thing is the last, in the past it's been 10 minutes. I think we're going to bump it to 15 or 20 minutes next year, where there is a live Q& A portion. So,

for example, Dr. Afrin does his, 40 minute pre recorded presentation on mast cell activation. The last 20 minutes, he is on camera. Everybody can see him, and [00:32:00] people are typing in their questions, and I'm moderating them, telling them, and they're getting live answers right there.

So that was very, very popular. And we're going to continue doing that as well. And generally, we've had four to five speakers. And then we've had, you know, that exhibit time where they can go into those online exhibit booths and interact with you know, other organizations and sponsors. And it's generally in the afternoon and and it's wonderful.

And then we like to hear from the listeners or the, you know, participants on what they want to hear. And that's where we get a lot of our ideas.

Jill Brook: That's great, and what is the cost for that?

Cheryl Faber: It is going to be free next year.

Jill Brook: Wow.

Cheryl Faber: Free the first year, and then we, I believe, did a 10 fee for, a registration fee for our 10 year anniversary and to help offset some of the, the costs of adding this new program, this new technology. But it's going to be free from now on. We [00:33:00] want this program to be accessible for anyone and everyone, and not have that be an obstacle to attendance.

Jill Brook: Oh, that's beautiful, okay, and I know what listeners, what you're thinking, we'll put all of the links in the show notes so...

Cheryl Faber: Definitely, please do. The registration is not open yet for Dyscourse, but as soon as it is we will make sure you have the link, but if there's any questions about it in the meantime, they can email me directly. I'll be glad to answer them, and yeah, we hope that your listeners will participate.

Jill Brook: Fantastic. So, Dr. Bryant, I had a question that I wanted to ask you. Since you are always teaching about dysautonomia, what are the things you would like people to know about the experience of people who suffer from dysautonomia? Like, what do you teach? What do you teach about what, you know, if there's people who don't have dysautonomia listening, caregivers or whatnot? What do you think is important for them to know about the experience of it?

Dr. June Bryant: So, I really [00:34:00] feel like it's very important for them to know how important education is. And,

of course, that's our mission is to educate, but to educate themselves if they do have questions. And sometimes, I mean, my hope is that the education will be available to them whenever they need it. Other things is trying, if you do have someone that you know that does have, you know, Dysautonomia or POTS or any form that you need to be flexible with them and know that sometimes, you know, you know, their plans may change and it may be at the drop of a hat.

You know, they may be feeling well and then they don't feel well. And so it's so hard when our lifestyle is such, so go, go, go and appointment oriented. And you know, it's, it looked at as a, as a hassle to have to reschedule. I mean, hello. I mean, it happens all the time, but with them that need to be flexible and being understanding it's really helpful for [00:35:00] them to know that,

that they are understood. I also like teaching those that don't know anything, of course, where the resources are but also as a provider, it's our role to be an advocate for our patients. So, you know, we listen to them and because they know their bodies more than we ever could, you know, we've liked, as, as clinicians, we like to see and we love it when we have clues on, you know, lab work or, you know, different things that we can actually visualize.

Or say, or do a simple swab and say yep, this is your diagnosis. Well, dysautonomia is not that way and we just have to have patience and try not to get frustrated and know where to go if this is a possible diagnosis.

And even as, even, I guess another thing I like to mention, especially to our clinicians and providers, and involve family members too, is knowing that sometimes you need support too, [00:36:00] as the provider, because it's okay that you don't know all the answers, no one does, but not to be so hard on yourself,

to be willing to learn more, and so that way you don't leave frustrated and just give up on it, because complex illnesses such as this is just, they're just it's just education and, and understanding and flexibility and all of the things that I just mentioned.

So those are the big, big things I, I want to mention that I feel like are really important for takeaways.

Jill Brook: That's a great point because I think as patients, we don't consider how it's tough on doctors to choose this because they could be doing something like, I don't know, something that has a really high success rate and an easy, or maybe not easy, but at least a straightforward protocol to enact.

And so, that's, that's great that you are sensitive to that and helping them with that angle too. Wow. Well, you guys just do so much fantastic [00:37:00] work. It's not easy to have a successful non profit and to get people involved and have them, you know, be there long term and, and you guys have really created a beautiful thing there.

And so thank you. Thank you for everything you're doing. Is there anything else we should know about Dysautonomia Project and where can people find you and all of your great stuff online?

Cheryl Faber: Let's see. So I would just, I would just really love to say that to anybody out there that

has been diagnosed or maybe you're not diagnosed, you don't know what's going on, you're not alone. There are organizations like ours and other POTS groups, Standing Up To POTS and so many others that are out there to help.

You're not alone and there is hope. And please feel free to reach out to us at the Dysautonomia Project because we would love to [00:38:00] provide education or just let you know that there is someone in your corner. Our website is www .dysproject, that's DYS project.org. And at that website is where you'll find that patient assessment tool,

the videos that we talked about, the Provider Finder, Dyscourse will be on there. You could look at previous Dyscourse programs, but it will also have Dyscourse registration when that opens up next year. It'll have registration for the Clinician Program. You can learn more about the Residence Course and then, our medical advisors and medical ambassadors are listed on there, so you can get to know those professionals who, you know, are just coming alongside us and providing so much support. There's faculty members, like you mentioned, Dr. Cook and Goldstein, Elizabeth Golden. All of those that I mentioned before. My email address [00:39:00] if you'd like to reach out to me personally is Cheryl, C-H-E-R-Y-L, at dysproject.org.

So feel free to reach out for any, any questions that you have or to provide information about a provider that is treating you that you think would be an excellent addition. Or if you are a provider and want to be added to our provider list, let me know. Or if you want some, you know, customized education for your office or your hospital, whatever that looks like.

We are always open to creative new ways to spread that education. And we like to say that education is the number one form of treatment. So, and we believe that the more you're educated, the more you can be helped and like Dr. Bryant said, you don't have to be the expert on it, but willing to learn and, and, and listen and say, you know, we're in this together and I'll help you find the answers.

Jill Brook: [00:40:00] Amen. The best dysautonomia doctor I ever had, who helped me the most, was a physician who knew absolutely zero about it, but was willing to listen and learn, and just because she was willing to take time and help, she actually helped me more than anyone else ever.

Cheryl Faber: That's great.

Jill Brook: So I love it that you're empowering, you know, providers everywhere to be that person for someone.

Cheryl Faber: I'm so glad to hear that because that is so true. You don't have to be the autonomic expert in order to help someone. There are autonomic experts, and there are autonomic labs, and for more complex cases, that, you know, you can refer people to those, but, but you don't have to be that expert to help at least get someone on the right path.

And the Clinician [00:41:00] Program is the perfect opportunity for a provider who wants to learn more. To learn more from the experts, to be able to come back to a patient and maybe say, Wow, this sounds like all those things, all those symptoms and multiple organ systems you've been talking about. This could be this, and now I have some tools to know what to do and how to take it to the next step.

So, I'm really excited to hear that you had that experience with a doctor who was willing to just say, I want to learn. Let's do this.

Jill Brook: Yeah, and I want to give a shout out, I want to thank you two so much for your time here and for everything that you do, and I can just tell just how much brain power and compassion and heart you bring to this, to do for for the whole community. But I also want to shout out to Kelly Freeman, your founder, who I've been fortunate to speak to her once or twice,

and she's so lovely. And the fact that she made [00:42:00] her terrible experience mean something for everyone else so that they'll have a better one is just beautiful. I just love it when people do that. And it's so rare. And and you guys just have made such a beautiful thing down in Florida. And and I love to see that you're now reaching internationally and bringing it everywhere.

That's just amazing. Thank you so much.

Cheryl Faber: Oh, you're so welcome. Thank you so much for having us and, you know, just continuing to spread the word about this important topic. We really appreciate it.

Jill Brook: Wonderful. Well, thank you so much. And hey listeners, that's all for today, but we'll be back again next week. In the meantime, thank you for listening. Remember you're not alone, and please join us again soon.