Invitation to DysCourse, presented by The Dysautonomia Project

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Jill Brook: Hello fellow dysautonomia patients and lovely people who care about dysautonomia patients. This is an audio invitation to a great online event called Dyscourse, presented by the Dysautonomia Project. And if you listened to episode 2 37, you already know that the Dysautonomia Project is a nonprofit that is the global leader in dysautonomia education with a mission to educate patients, healthcare providers, and communities.

And here to tell us more about the Dyscourse event is Cheryl Faber, their wonderful director of education. Cheryl, welcome. Thank you for being here.

Cheryl Faber: Oh, thank you, Jill. It's great to be here.

Jill Brook: So what is the Dyscourse event?

Cheryl Faber: Oh, this is such a great event. It's our annual, virtual education event for patients and caregivers. And, and its real sole purpose, is providing information and tools and resources for patients and caregivers [00:01:00] to manage autonomic dysfunction. Even though it's geared to this audience, a lot of times healthcare professionals will pop in just 'cause there's great nuggets of information to glean from it.

So it's really open to anybody who wants to learn more. And it's great because there's different speakers on an array of topics and live Q and A portion with those speakers as well.

Jill Brook: Excellent. Okay, so can you tell us more about the topics and the speakers?

Cheryl Faber: Yes. So we have four speakers this year who are all experts in their field. The program is going to start off with Dr. Will Frye. He's been a speaker in the past, extremely well received. He's a pediatric psychologist at Johns Hopkins All Children's, and he's going to have a mental health segment. And then next, our own wonderful Jill Brook, patient, yourself and, and nutritionist.

Very connected in the dysautonomia community. You're gonna speak on practical nutrition tips, and I'm really excited [00:02:00] about that because we've had a lot of of interest in previous years from patients who gave ideas and really wanted to hear about nutrition, so we're grateful for that. And then Dr.

Howard Snapper he is a cardiologist and the director of the Autonomic Lab at WellStar Cardiovascular Medicine in Georgia. He's speaking on managing medications. And finally we're gonna hear from our keynote speaker, Dr. Satish Raj. Such an expert in the field. He is a cardiologist and founder of the Calgary Autonomic Investigation and Management Clinic, and he's going to speak about practical tips for orthostatic intolerance and POTS. Practical tips

every patient should know. So it's just a really, it it's really exciting to have these four who are just gonna provide, you know, insight into these four different areas.

Jill Brook: Awesome. Yeah. And I know from speaking with one of your volunteers, Ashley, who helped me prepare, [00:03:00] that I think you're gonna have a lot of really practical things this year for patients, to make sure they come away with things that really they can just immediately start putting into use every day.

Cheryl Faber: Exactly. And one of the things that we do as well is we have each speaker create or give us their, their Toolbox Tips, we call it. And it's just a one page handout that we have from each speaker of the top, you know, important takeaways from that talk, and those will be available for download as well.

Jill Brook: Well, I know that you guys have put so much care and so much time and thought, and I think you've been working on this for months and months and months, and I know

that in working with your team, I've been so impressed with everyone, is so organized and so dedicated. I just know this, this is an amazing event and the, the physicians that you have participating is a testament to that.

So when is this? Where is this? What is the cost? Tell us about the logistics.

Cheryl Faber: Sure. So it's going to be Friday, June [00:04:00] 6th. So gosh, just a few weeks away from about noon to five 30, but tune in a few minutes prior because there will be a welcome video. I'll be doing that and it'll, it just give you a feel for what you're about to experience and how to navigate through it. And also you could visit the resource exhibits to learn more about other organizations and resources for patients with dysautonomia.

The great news, though, is you've got access to this information for three months, so that'll be great. It's a lot to take in, in a half a day program so you can go back, you know, as often as you want for three months and view it again. So this is all virtual. It's a free event, which we're really excited about.

We are very grateful for donors who make this financially possible. Their generosity allows us to offer this for free. And just so grateful for the speakers who give their time and talent and expertise to make [00:05:00] this happen. So, you know, it's, you can do it from, from the comfort of your own home on your own laptop and computer, since it's virtual.

So we really hope, especially since it's free, that will open the door for anybody and everybody to sign up and join us.

Jill Brook: So patients can join from their pajamas if they want to.

Cheryl Faber: Exactly. They sure can. That's the best way to do it, you know, I know oftentimes patients are in bed or they need to, you know, sit and prop their legs up, so we want this to be accessible to them. And, and so it is this way.

Jill Brook: Yep, I'm doing that right now and I'll be doing that on the day. And it it sounds like there is an advantage to showing up on June 6th because then you can participate in the chat and ask questions. Right?

Cheryl Faber: Yes. Yes. And it'll be done through the chat feature online. So you just type in your questions. That has been a very popular portion of the program and some of the [00:06:00] speakers might try to monitor and answer those as they come in. But we'll have, I'll be moderating and we'll have another board member who will help to do that.

And you know, you can upvote questions if you see one that you think, oh wow, what a great question. I really wanna know the answer to that. You can do that and we'll just hit as many as we can in the 20 minute Q and A session.

Jill Brook: Okay, perfect. Wonderful. Well, this sounds amazing. I can't wait. Where can people learn more and sign up?

Cheryl Faber: So the best place to go is directly to our website, www . dysproject.org and that will take you to the homepage. And if you scroll down just a little bit, you'll see the Dyscourse banner, a registration button, you can click on that and that takes you to the Dyscourse page where you can learn more information,

you can see speaker bios, you can sign up. So I'd encourage you to do that. It's super easy [00:07:00] and quick, and it's a program you don't wanna miss.

Jill Brook: Wonderful. We'll put the link in the show notes, and I just wanna say thanks again to the people making this possible, because I know that it's not free to put it on, but it's free to the patients and the caregivers. Is there anybody that we should give a shout out to, to especially thank for making this possible, or is it just a group

effort?

Cheryl Faber: It's a group effort. It really is. We've just got, you know, so many wonderful donors who give so generously. And again, the, the speakers who are experts in their fields, who lend their time to us and, and just have the same passion for educating patients and caregivers on autonomic medicine, that's who we're grateful for.

So thank you. And thank Dr. Snapper and Dr. Frye and Dr. Raj and all the previous physicians and others who have joined us before. You guys make it possible. We're doing a lot on our end too with [00:08:00] the Dysautonomia Project. It is a huge undertaking for sure, but it, it's a team effort between all of us.

Jill Brook: Awesome. Well, Cheryl, thank you so much for being here. Thank you for all the great work that you all do over there at the Dysautonomia Project. You guys make a really big difference and you remind us that when none of us patients would ever choose to be in this community, once you get here, the people are amazing. They're supportive, they're helpful, they're smart.

I mean, it's it's just funny how amazing this community is where nobody chose to be here. So, thanks a million.

Cheryl Faber: Yeah. Oh, you're so welcome. It, it is definitely a community and you know, it's just so important for people to know they're not alone and there is, there's hope and there's people who understand. And so connecting patients to programs like this where they can see, you know, these healthcare professionals who get it and understand and can give them these tips to really make a difference in, in their everyday life. It's what it's all [00:09:00] about.

Jill Brook: Thank you Cheryl. And okay listeners, that's all for now, but take good care and I hope to see you at the Dyscourse on June 6th. Remember to click the link in the show notes. It'll take you right to the registration. Okay, thanks everybody. Bye-bye.