Sjogrens Grant Proposal

Good evening.

My name is Laurie Hollis, and I'm here to speak to you today on the behalf of dream team

for the Excelsior College

grant proposal for the Shogun's disease,

I graduated in 2011 with my associates degree

in medical assisting from Cleveland State Community College.

And I have been working as a medical assistant every since.

So I do have a lot to do with the medical field.

I also had a small hiatus where I taught

for three years in the medical assisting field.

So I do know a lot about patients and how they feel and what they do need.

This is why I have special,

such a special communication with the patients and why I took a special interest

in wanting to help the patients with different things that they have going on

our agenda today

is one

to tell you what show grins diseases,

to to focus more on the more severe parts of what

Shogun's diseases because most people will tell you it's just oh,

dry eyes and a dry mouth and it's not.

So we're going to focus on how it can truly affect a person's life.

Um three, we're gonna give examples of how the dream team can help these individuals

and for how can excelsior College help us help those patients

with their lives and have a better life in the future

as an overview. Um I want to cover some of the symptoms that

shogun's disease has

shogun's diseases accompanied by um dry eyes as we know, fatigue,

dizziness, migraines,

ulcers in your mouth because when you start thinking

about your mouth and just a dry mouth.

It's not just a dry mouth.

So if you have a dry mouth that's gonna affect your eating,

you're drinking

your ability to chew

your ability to speak,

um your ability to breathe

in necessity as far as that your your throat can swell.

Um as I mentioned, you can have problems with eating.

There's also other symptoms you can have that are many,

many more than I can mention in this

even um, one

presentation that we're happy.

So outside of this presentation,

I will also give you some websites that you can go to.

One of the major ones is the show grins

foundation website. I've got it listed below right here

and you can go to that. It has a wealth of information on it.

Um they also do urge you to become a member.

So that's one thing I want to try to get away

from for our um future members of the dream team,

I would like our members to have a free website that they can

go to and not be urged to join or become a member of,

but like I said, there is a wealth of information on the show grounds

dot org website. So

don't get me wrong, they do give a lot of information there,

but then they urge you to give money

um

to them as well, which is great. That's a great foundation. Um another couple of

um symptoms that there are, there's as I mentioned dizziness, migraines.

There can be uh

ulcers in your eyes due to the dry eyes.

You can have vision problems, you can have blurred vision.

Um It can lead to blindness.

So just to think from somebody saying, oh, you can have dry eyes

and it actually lead to blindness.

So I mean that's that's a big take away that people just

leave out there that they don't, they don't tell you.

Yeah. Oh by the way, it can lead to blindness.

My mother has this disease and she has to have her vision checked every

six months just to make sure that her vision is still in check.

So it's a major deal to have this um

this disease and have to deal with it. She takes medication for her dry mouth.

She takes medic medication for her eyes.

So she she has both of those um going with with that

Children's diseases, affected

four million people currently that we know of. Those are just the ones we know of.

Can you imagine how many people are out there that

are suffering with a dry mouth or dry eyes that

just don't think anything about it

um or have migraines or have dizziness or have any of the other things

that might possibly go with this that just haven't placed it with something.

Um It takes a lot to

figure out what she

means is it's not just a simple blood test and oh you've got it.

30 to 40% of people

can have shotguns and it not show up on a blood test.

My mother's did not show up on her first three,

count them. Yeah.

123 blood tests she had, it didn't show up on her first three blood tests.

So

it's not something that just jumps out at you and says, hey, this is what you've got.

So you have to be very, very careful about that.

Um, the characteristics can lead to confusion

um, about this disease because people just don't understand exactly what it is.

And so they just kind of steer away from it and don't pay any attention to it.

As I said before,

you can become an ambassador on the show grounds foundation website

and spread the word about it.

Um, they just, basically by that they want you to just tell a friend,

tell a coworker, um, started thread on facebook or instagram

and just spread the word about Sjogren's disease and and

just get the word out there about what it is.

And just

if you can help one person

to know what she

means is and

and that if they know somebody down the road

and they say, oh,

you've got this symptom and this symptom and

this symptom you should have that checked out.

It might be show grins,

you may have changed his life. So that, that's a pretty big deal.

She grins is also a very complex um, invisible disease as I mentioned,

um this is all a direct quote from venus Williams right here.

I'm gonna read it directly because it is a direct quote

as a patient,

I was misdiagnosed many times and my symptoms got progressively worse to the point

where I could not play professional tennis anymore,

understood the daily struggles and the strength it takes to get up

about your journey. But I also know that support and education.

This is created by awareness, applaud the patients who shared their stories during

the show grounds awareness month and everyone who's living with this disease.

Your stories have inspired me and I encourage

all patients to continue to talk about this disease

and make their health a priority.

You are not alone, venus Williams.

So that to me says a lot about her as a person that she's

willing to get out there and tell the world that she has this disease.

Um and I know she's also a spokesperson for the Liberal V,

which is a migraine medication.

So that goes to show you that she probably gets her migraines from Shogun's disease.

So Shogun's has robbed her from her tennis career.

Her sister still gets to play tennis, but she does not,

she gets to watch from the sidelines.

So it's just, it's, it's very, very debilitating at times

and it's something that can take your livelihood

and people don't think about that. Um, it can take your teeth

if your mouth is so dry that it actually causes your teeth

to crumble

um and decay and you have to have your teeth rebuilt

if you can afford it. Some people can't afford it.

Um I know one patient who

recently came into my office and was wearing her mask and

I said we we don't have to wear the mask anymore.

And she said,

oh no, I'm wearing my mask because I don't have my teeth.

And

I said, well you you can put them in if you want to.

And she said no, I don't have my teeth, I haven't had the money to have them replaced.

So she was still wearing a mask to cover up her face

even though the covid scare was gone

because it covered up her teeth or her missing teeth.

So she was very

grateful for the mask because she could get out. And about.

A lot of people will not leave their house once they lose their teeth.

Um Just think about how embarrassed you would be if you didn't have your teeth.

If your teeth were missing, it would be very embarrassing.

So that's that's a decline in help.

Once you don't have your teeth and your health starts to decline

you,

it will go down fast if you're not leaving

your house to go to your health appointments.

So that's what we want to help these patients do,

we want to help them um with their dental bills,

help them with their um dental implants.

If we can help them with their eye symptoms,

help them to recognize their symptoms.

The proposal that we have for you today is just currently to work

on a project for this disease that not many people have heard of

to get the word of shogun's out.

We would like to go to healthcare

fares

Every weekend or every other weekend as we can

find them locally within a 200 mile radius.

And to get the word out

I will get brochures

and I will get business cards. I will set up a booth and I will just have a health fair

um there at these um local health fairs and spread the news. Um I will

help them understand where they can go for more help

and get their their information.

I will, I will show them our website, We're going to design a website

that will have a phone number that they can get in contact with people.

For more help as far as shogun.

Um The 1 800 number

and there'll be just more information that they can get to all

this depends on how much help I can get from Excelsior College.

So the more help I can get from Excelsior College, the more people that we can help.

I do have a another slide that shows

how much are brochures will cost.

The brochures will be $233 for the 1st 1000 business cards are $22.50

for the 1st 1000.

That's just the business cards and brochures.

Of course there is mileage that we would have driving back and forth

um, to these health fairs

and we would of course assume all responsibility for our food.

We would never ask you to pay for our food, but um, we would ask for the mileage

and then we would just need a table and a backdrop

Which would not be over another $200 or so dollars,

but any amount of money that you can give us,

I promise you every penny will go towards this foundation.

So, um, in conclusion,

we, we wanted to inform you about Sjogren's disease.

We wanted to focus on the more severe symptoms.

We wanted to explain how shogren sufferers

suffer in various ways and we wanted to give some examples of how the dream team

that we have formed can help these patients with their individual medical bills,

medications and mental health if needed.

Um, and get them some support.

Um,

or point them in the right direction to get some

mental health if that's what they need because it can be

um,

a little depressing if you have this and you can't get out

of the house and you might need some some mental after affirmation

um, as well, and we will be glad to help them with that as well.

Um, I thank you for letting us present our proposal today

and if you have any questions, I will be here to answer any of those. Thank you again.

My name is Laurie Hollis.

Sjogrens Grant Proposal

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