July 31, 2025 • 30 mins
The mission of the Myasthenia Gravis Association of Western Pennsylvania, Inc. is to address the medical, social, and emotional needs of all persons affected by Myasthenia Gravis and to disseminate information to persons with Myasthenia Gravis, their families, the medical community and the general public. https://mgawpa.org/
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Episode Transcript
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Speaker 1 (00:03):
And welcome in. This is a public affairs program shedding
the light on the interest, issues and concerns of the
greater Pittsburgh area. Good morning to you. My name is
Johnny Hartwell your host today. My guest is Jim Joyce,
the executive director of the Mythenia Gravis Association of Western Pa.
Mister Joyce, how are you, sir?
Speaker 2 (00:21):
Doing great? Johnny? Thanks again for having me in.
Speaker 1 (00:23):
It's been a minute.
Speaker 2 (00:24):
Yeah, probably about a year, I think, So what's going on?
But it's great to see you.
Speaker 1 (00:29):
Well, I'm glad you're back in here. So what have
you been doing over the last year. Anything in your organization?
It's the little organization that can you do so many
things and you have just a skeleton crew, but you
do so many great things for the organization.
Speaker 2 (00:44):
Yeah, we're really proud of the support we give to people.
With my CEO Gravis. We do a number of different programs,
support groups, both in person. We added a new virtual
support group this year for people who may not be
able to get out to our support group in person
or who may live out of the area. Were doing
a lot of education support programming. So yeah, like you said,
we're a pretty small organization in terms of staffing, but
(01:07):
we cover a big geographic footprint and we help a
lot of people, for sure, a.
Speaker 1 (01:11):
Lot of creative fundraisers. That's why I love having you
come in because you always have some sort of creative
endeavor to talk about.
Speaker 2 (01:18):
Yeah. Absolutely, And we had our Purple Party in the spring,
which went great, you know over in Carnegie Joe Beth
Barr and her daughter Jamie Stivers host of that for us.
We always take part in the high Mark Walk in
June and coming up this fall and I'm glad we
have a chance to talk about it. Is our two
thousand and five Comedy for a Cause fundraiser, which we're
(01:39):
really excited about.
Speaker 1 (01:40):
And you have it on a Saturday night we do.
Speaker 2 (01:42):
Yeah, we're having it on Saturday, November first this year.
Put it a little bit later in the year. We're hoping,
you know, we get it past a lot of the
things that take place in the fall, but before the
holidays we'll get a good crowd for the event.
Speaker 1 (01:54):
Is David k back on board.
Speaker 2 (01:55):
Yeah, David from Slapstick Productions is organizing the comedians for us.
He's still putting together the lineup, but he always does
such a great job. David's a great partner for us.
Speaker 1 (02:06):
All Right, if somebody wants more information on the organization
or some of your fundraisers. What's your website again.
Speaker 2 (02:11):
It's www dot MGA, WPA, dot org.
Speaker 1 (02:17):
Okay, all right, let's talk about my cenia gravis. Tell
us everything we need to know.
Speaker 2 (02:21):
Sure, yeah, So, my cea Gravis is an autoimmune neuromuscular disease.
It's chronic in nature. Right now, there is no cure,
but fortunately over the last several years there's a lot
more treatments, so people can live with this disease, live
a pretty normal lifestyle once they get their symptoms in order.
But really it attacks the person's volunteer voluntary muscles. So
(02:43):
some people will have the ability taken away in terms
of their movement of their arms and legs. Others may
have difficulty breathing or swallowing. A lot of times someone
may have drooping in their face, their eyelids. It's called
the snowflake disease because it impacts every person a little
bit differently, but it really focuses on those voluntary muscles.
(03:06):
So people you can live with the disease, but organizations
like ours really try to help them, support them, work
with their physician team to really get them into a
good treatment pattern so they can live a pretty normal lifestyle.
Speaker 1 (03:19):
You know, it's amazing how the advances in science has
really take on autoimmune diseases and really have improved people's lives,
and we're seeing that with mycene AGGRESSIONYA.
Speaker 2 (03:30):
Absolutely Again, for many, many years and really decades, there
weren't a lot new treatment, a lot of new treatments
as it related to my ceo gravis. But just within
the last three or four years, there's probably three or
four new treatments. So it's an exciting time not to
have the disease. But at the same time, there is
hope for people who have it because if one treatment
doesn't work for them, there's others that they can try.
Speaker 1 (03:52):
And it hits different ages.
Speaker 2 (03:55):
Yeah, my cleo gravis is not really focusing on one
specific age group, race, male or female. So we've had
individuals in their twenties that we work with up through
their eighties and nineties.
Speaker 1 (04:11):
So there's not any initial symptoms or is there.
Speaker 2 (04:14):
There are symptoms, and many times it's misdiagnosed because it
can many times present itself almost like a stroke. People
may have slurred speech, as I said before, they may
have some facial droopage, just overall weakness in their arms
and legs. So you know, it takes a while sometimes
for it to be diagnosed. But once they're diagnosed.
Speaker 1 (04:34):
Oh is it diagnosed?
Speaker 2 (04:36):
Usually through like different blood tests and things like that,
and you know, I think physicians many times will then
go down a list sort of check off some things
that you know, they can roll out like maybe they
had a stroke or something along those lines, and then eventually,
you know, they get to the point where they diagnose
them with my ceogravis.
Speaker 1 (04:54):
And now tell us a little bit about your organization.
Speaker 2 (04:56):
Yeah, so we were founded in nineteen fifty five, so
we're actually celebrat our seventieth year of helping people. As
I said before, cover a pretty large geographic footprint. We
cover twenty six counties in western Pennsylvania plus parts of
New York, Ohio, West Virginia, and Maryland, and we really
focus on three specific areas of supporting people. We focus
(05:20):
on education, advocacy, and support, and we do that through
a number of different programs, both in person virtually. We
have telephonic interventions, especially for people who are newly diagnosed,
we can hook them up with one of our volunteers
who can sort of walk them through what they may
experience with this disease, help them establish a good list
(05:43):
of questions to take back to their physician, because that's
something we really stress. We're not meant to take the
place of their physician and other members of their healthcare team.
We provide a supplement we provide when they visit their
physician if they have questions or they need some additional support.
That's where we sort of come in and work hand
in hand with their care team to make sure they're
(06:04):
getting that extra support.
Speaker 1 (06:06):
And because the disease manifests itself in various forms, it's
probably comforting for people who may have initially got the
disease or got the diagnosis to know that they're not
alone and that there are other people who are and
they probably have a lot of questions that maybe a
physician doesn't have time to answer or you know, to
(06:26):
address their concerns. So that's where you step in and
educate them.
Speaker 2 (06:30):
Correct And the other thing that's really unique is that
MYCEO graphics is a pretty rare disease. It impacts probably
one in every eighty thousand people, So it's not something
unless someone has the disease or maybe knows someone who
has the disease. Most people have never heard of myceiographs
unless it's impacting them directly in some way. So yeah,
(06:51):
as you said, when they're diagnosed, many times people feel
isolated alone because number one, they've probably never heard of
the disease. Number two, the people around them, their family, friends,
people they work with probably haven't heard of it either,
so they sort of have that loneliness and isolation. So
that's where we can step in and you hit it
right on the head.
Speaker 3 (07:12):
You know.
Speaker 2 (07:12):
The physicians do a great job that maybe don't have
the time to spend hours with an individual sort of
walking them through the disease process, helping them understand the disease.
Speaker 1 (07:22):
They have the time to educate the caregivers or loved
ones of people who are supporting that person.
Speaker 2 (07:27):
Yeah. Absolutely, and that's part of our mission is to
not only provide that support to the patient, but also
their family and friends and also healthcare professionals as well.
Because it is such a rare disease. Unless someone's really
specializing in my snea gravis, they may not know a
lot about the disease, so our goal is to really
help them understand it better so they can provide better
(07:47):
treatment to their patients.
Speaker 1 (07:49):
And you mentioned advocacy, So what do you do for that?
Speaker 2 (07:53):
Yeah, so we are involved in a lot of different
research studies. We try our best to work with insurance
companies or equip our are the people we support because
many times as these treatments are coming their new treatments,
they may not necessarily have approval from the insurance company yet.
So we work with the patient, with the physicians to
(08:13):
really be able to connect with their insurance companies, show
why this is important for that person to have this treatment,
and then try to work with them to accomplish that
goal of getting that treatment. We also are working more
and more with elected officials to really stress the importance
of providing the treatment, paying for the treatment, understanding what
(08:34):
my cenia gravis is. And then also with people's employers
because again, if someone would get this disease in their twenties, thirties, forties,
they may have a lifetime of work ahead of them,
and they may have days where they have a hard
time getting out of bed because they're just so weak
or their muscles are not responding the way they would
(08:54):
like them to. So really trying to quip that person
to be able to talk to their employer, explain what's
going on on, and get a plan in place for
them so they can be supported in their work environment.
Speaker 1 (09:05):
It's a chronic disease and there's no known cure correct
and so you know, they will have good and bad days,
and so they could go to work and be a
very productive person at their employer for their employer, but
you're like you said, there's going to be days where yeah,
it's just it's going to be difficult.
Speaker 2 (09:21):
Yeah, And most people, you know, when they're diagnosed, they
are going to have some symptoms that aren't in the
best control. And that's when we try to help them
work with their physician, get on a good plan in
terms of treatment, and then also educate them on you know,
knowing their own body. If they have a day where
they're doing a lot of strenuous activities, they may need
to take it easy the next few days. The summer
(09:44):
that we've had this is not great in terms of
a person with a chronic illness. This heat and humidity
can really wear a person down. Even if you don't
have a cry. I think you know, people can feel
pretty exhausted based on you know, just how overwhelming the
heat has been this summer. That's even amplified more with
someone with a rare disease or chronic illness like mice
(10:05):
CEO gravis. So really trying to help them get a
game plan in place so they can properly prepare, so
they know, hey, I have this to do today, I
may need to take it easy tomorrow in order to
help myself recover from what I did earlier in the week.
Speaker 1 (10:20):
You mentioned three pillars education, advocacy, and what was the
third support? Support? Okay, yeah, and so what do you
do to support the individual?
Speaker 2 (10:27):
So we offer another well, obviously, you know, just the
day to day things, them calling into the office, us
trying to connect them with different resources. But in terms
of formal support programming, we offer an in person support
group on a monthly basis where people can come. Again,
we invite the patient, their family members, other members of
their care team, and that's just really a conversation. Sometimes
(10:49):
we'll try to insert specific education, but at the same
time we really try to let the patients drive whatever
they want to talk about. In that support group. Recently,
we just started a virtual version of that. We had
a gentleman call in. He has some counseling background and
he was just recently diagnosed with my CEO gravis and
was just having a hard time getting to and from
(11:12):
different places. So he reached out to us and said, hey,
would you be willing to help me get a virtual
support group up and running, which we were thrilled. We
were getting more and more calls from people outside of
Western Pennsylvania who were looking for support groups but didn't
necessarily want to travel you know, hours to get to them.
So we started that in June, and we've had, you know,
(11:33):
a decent start. I think we've had like six or
eight people participating on a regular basis for those virtual meetings.
And then, as I said before, we also have some
one on one telephonic counseling that's available where someone can
be called by one of our volunteers who's also a
nurse who's worked with people with my cenio gravis for
(11:54):
a number of years and really helped them learn a
little bit more about the disease. But then also so
you know, prepare for upcoming doctor visits, things like that, and.
Speaker 1 (12:03):
You have support groups what once a month or so?
Speaker 2 (12:06):
Yeah, So our in person support groups on a monthly basis,
our virtual support groups right now are two times a month.
We're trying to really frontload a lot of those so people,
you know, get used to coming to them, get used
to participating, and then we'll sort of see going forward
if we'll continue to do them twice a month, or
maybe we'll back off to once a month with those
as well.
Speaker 1 (12:24):
It makes a lot of sense because you have such
a large area. You're the you know, my scene of
Gravis Association Western Pa. But like you said, you're you're
spilling into other states and so you know, it's very
difficult for somebody maybe from ash to Buela that come
into to Pittsburgh. Yeah, absolutely a meeting. So that makes
a lot of sense.
Speaker 2 (12:42):
And it's interesting I think, you know, as we've sort
of expanded our programming and especially our online social media presence,
we've gotten calls from across the country people looking for support,
and we've actually had individuals from Australia and parts of
Europe reach out to us the email, not necessarily looking
for support, but just looking to tell their stories. So
(13:04):
we try to really help them, you know, be able
to communicate and sometimes that's very therapeutic as well, just
being able to tell what's happened to you and how
it's impacted your life. So we look at that as
part of our support system as well.
Speaker 1 (13:17):
All Right, I have more questions about the disease, but
I don't want to get too far without talking about
the MGA Comedy for a cause it's coming up in November.
Tell us everything we need to know.
Speaker 2 (13:26):
Yeah, So it's as I said before, it's taking place
on Saturday, November the first, and we changed the venue
this year. We had the last few were out in
Westmoreland County and we had a lot of our supporters say, hey,
could you maybe do something in Alleghany County, So we
decided to listen to them. We're actually having that at
the Kennedy Township Fire Department, their banquet hall that's over
(13:47):
in McKees Rocks, so a nice sort of central location.
As I said before, we're working with David K and
Slapstick Productions. David's worked with us for years on this
on this fundraiser. Yeah, how many years had Yeah, so
this we've sort of missed a few years with COVID
and some other things.
Speaker 1 (14:04):
I wonder why.
Speaker 2 (14:05):
I wonder why, but I believe this is our eighth,
eighth or ninth comedy for a cause. So it's it's
always very well received. People have a great time, and
we're really excited about it. We're throwing a few new
wrinkles in this year. We have our regular general admission
ticket and those are forty dollars and that includes, as always,
(14:28):
the buffet, dinner, the dessert table. We'll have a number
of different you know, raffles and things like that. But
this year we decided to also have a VIP ticket,
which is fifty dollars, and that gives you the option
of coming about an hour before the program, Uh, have
some wine and cheese, Uh, you know, sort of interact
(14:48):
with some of the leadership from mg A.
Speaker 1 (14:50):
And your first in line for the dessert.
Speaker 2 (14:52):
Yeah that's right, you get you get the fast pass
for the dessert table. Yeah. So we're really excited about it.
This year is a byob event. We're not having a
cash bar, so we thought that may be a great
way as well. If someone comes for the wine and
cheese reception, they might have the ability to purchase some
of their BYO B bottles from the people providing the
(15:14):
wine at that event.
Speaker 1 (15:15):
And what is the money, the money that you raise,
what is it earmark for?
Speaker 2 (15:19):
Yeah, so all services that MGA offers are free. We
don't charge people for any of our support programming and
of our education programming, all of our things we do online,
social media. Everything we fundraise goes towards you know, those
free patient support services. So anything we do, you know,
(15:40):
gets rolled back into the support and operational costs associated
with running the organization.
Speaker 1 (15:47):
All right, if there's somebody listening who maybe just got
diagnosed or maybe a loved one, and they're interested in
maybe participating in a support group or maybe finding more
information about education, what's the process, what do they need?
Speaker 2 (16:00):
So what we normally just ask people to do. Again,
they're all free, but we usually try to have some
kind of RSVP, just so we know how many people
are coming. Because for our in person support groups, we
provide some refreshments. We just want to make sure we
have enough for everyone. And then for our online and
virtual support groups, we'll send out a link before the meeting,
so we just know we just need to know who
(16:21):
to send that to. So what we ask people to
do is just call our office and that number is
four one two five six six one five four five
and they can, you know, just let us know they
want to attend. If they get our voicemail, just leave
a message. Someone will definitely get back to them. If
they feel more comfortable. More comfortable just emailing the office
(16:42):
to RSVP, that's perfectly fine as well. That email address
is MGA Office at MGAWPA dot org. Those are the
best two ways to reach us. Someone will usually get
back to you within twenty four hours and we'll get
you all set up in terms of date, times, location,
and anything else you may have questions about related to
(17:03):
the support group or other programming that we're doing.
Speaker 1 (17:06):
And you can get more information on the support groups
and some of the things you do for you know,
the individuals on your website.
Speaker 2 (17:11):
On our website as well, and I'll give you that
address again, it's www dot MGA WPA dot org. Yeah,
there's a lot of great information on there about the
disease itself, a lot of our old past newsletters so
they can see sort of different programming we've done in
the past, and then also about our support groups as well.
Speaker 1 (17:31):
We're talking with Jim Joyce of the executive director of
the Mycenia Gravis Association of Western PA. And it's Western PA,
but it should be.
Speaker 2 (17:41):
It's much larger than westerdaa Midwest region, I guess.
Speaker 1 (17:44):
Is that what it is. So tell us a little
bit about your organization, you know, because we mentioned that
it's a smaller, smaller organization. But so tell us about
your team.
Speaker 2 (17:53):
Yeah. So, as I said before, we were founded in
nineteen fifty five, so seventy years ago, there was a
gentleman who had a family member who had my CEO Gravis.
Back then obviously didn't have as many resources in terms
of the Internet or other ways to learn about the disease.
Uh So he took an ad out in one of
the local papers, uh said, anyone who wants to learn
(18:15):
about this or who has something to add, you know,
we're going to meet at this location on such and
such a day time. And from those very humble beginnings,
you know, that's where my Senior Graphics Association was founded.
Uh So, we've you know, changed a lot over the years,
but our focus has always been on those three main
components of support, education, and advocacy. And we do that,
(18:39):
you know with a very small team. It's myself, and
then we have probably twenty five volunteers who serve in
a lot of different capacities. Uh. Some focus on the education.
Speaker 1 (18:49):
Uh.
Speaker 2 (18:50):
Some are make our cookies for our wonderful cookie tables.
Others do a lot of our uh demand tables when
we have different educational programming. They'll help us with those
types of things. And then we have a fourteen member
board who also are all volunteers and do a wonderful job,
come from a lot of different backgrounds and bring a
(19:12):
lot of different resources and tools uh to our team,
just based on their life experience and their work experience.
Speaker 1 (19:19):
Uh.
Speaker 2 (19:19):
So we probably have anywhere of you know, thirty five
forty people, uh, but all but me are volunteers. So
that's another thing that we're very proud of is that,
you know, for an organization to run seventy years primarily
just based on pure volunteerism is a you know, real
wonderful thing.
Speaker 1 (19:38):
Well, it's an attestament that you know that that your
organization has reached out and been able to reach those
individuals who are willing to volunteer and volunteer for a
long time, right right. We touched on advocacy. You know,
with budgets as far as the state and federal there's
less funds to help nonprofits. Is that something that that
(20:00):
is also the you're facing as well, or yeah.
Speaker 2 (20:03):
I mean, obviously it's always a struggle for nonprofits in
terms of where their funding is going to come from. Now,
we don't receive any federal or state money just because
again we're not billing Medicare. All of our services are free.
We do work with the local United Way chapters who
are always very generous to our organizations. We have different
sponsorship levels, so we have a lot of education sponsors
(20:27):
that really help us to sort of make ends meet
in terms of our budget. And then also the fundraising,
which we're talking about today is very critical to us.
But it's it's good that we have a nice spread out,
you know, flow of revenue coming into the organization. We're
not overly reliant on one versus the other, but all
are very important and we run a very tight ship
(20:49):
in terms of our budget. We're not the organization that's
you know, going out and throwing lavish parties or or
you know, doing things that really are outside the scope
of what our mission is. We are very mission focused.
We you know, really are here to support individuals with
my sea gravis and that's where the majority of our dollars,
if not all, of our dollars go to in terms
(21:10):
of our budget.
Speaker 1 (21:11):
You mentioned that my estandia gravis is a very rare disease.
How many individuals in the Western PA area.
Speaker 2 (21:19):
Yeah, we we help. Again, it's sort of a very
inexact number. But you know, we have an email database
made up of patients and then other people as well,
but just strictly based on you know, patients or past patients.
We're probably talking somewhere six to seven hundred individuals that
we support, and some interact with us very frequently, others
(21:43):
just more when things come up where they need some
help with something. So it's it's you know, not everyone
utilizes our organizations so often.
Speaker 1 (21:51):
Do you get it? Maybe somebody that's new who's been
recently diagnosed.
Speaker 2 (21:55):
Yeah, I think we've seen that an uptick definitely in
the past years. And I think I don't know, you know,
if people watch TV, there are a lot more commercials
related to my CEO gravis because of the new treatments
associated with it. So I think people are becoming a
little more aware of the disease, So we have seen
an uptick, and that may be from a physician perspective
(22:17):
as well. Maybe people were diagnosing a little quicker than
they used to, so we are seeing an uptick. I
would say we probably get at least one or two
calls every few weeks with newly diagnosed people, which may
not sound like a lot, but for such a rare disease,
you know, to get three or four new patients a
month is pretty significant.
Speaker 1 (22:37):
What are your standard questions? What are the frequently asked
questions you get from those individuals?
Speaker 2 (22:42):
Number one, just what resources are available? I think again,
because not a lot of people have this disease. There
aren't a lot of you know, websites. There there's a
lot of knowledge out there for individuals to really just
go and learn everything on their own, so you know
what's available to me? Who can help me do this?
(23:04):
And the other thing is it's scary because I said before,
everyone is affected a little differently by the disease, so
it's not that well, I know this person who has it,
and this is what happened, so that's going to be
exactly what happens to me as well. It's very rare
that two people have the exact same sort of disease
exacerbation as it relates to mind SEE and GRAVIS. So
(23:25):
what we really try to do is connect them with
our volunteers, set up a game plan for them, especially
as it relates to how they're interacting with their physicians,
good questions to ask knowledge about treatments, and really you know,
helping them to become a champion for themselves to drive
their health care because it's pretty critical, you know, whether
(23:46):
it's for the patient or for their caregiver to be
a champion to ask questions, and we really try to
help fill in the gaps of what those questions might be.
Speaker 1 (23:55):
You mentioned that because it's a rare disease and that
your organization isn't funded by from the federal level or
state level, that these fundraisers are are paramount to your organization.
Speaker 2 (24:06):
Oh absolutely, And again we try to have a sort
of core group of fundraisers. We try not to do
something on a monthly basis where it's just always constantly,
you know, asking for more help or asking for more support.
We try to limit these to like three or four
a year. And as I mentioned before, the Purple Party
in the spring and this comedy show in the fall
(24:26):
are really the two main fundraisers that we do. So yeah,
we rely very heavily on these being successful, and you
know that's why we're thrilled to be able to talk
a little bit about it today.
Speaker 1 (24:36):
And the high Mark Walk you do that, yeah, the
high Mark Walk, and you also do something in December, right, Yeah.
Speaker 2 (24:41):
So we also this will be i think our sixth
year because this started right around COVID as well, we
do our virtual holiday paint and Sip. So we have
a art art therapist who is a wonderful friend of
our program, Christy Walter, and she will lead an art
project and then we partner with Cavoc Winery from Carnegie
(25:03):
to provide wine, and we do everything virtually so people
don't even have to leave their home. Christy will run
through a art project that they will participate in and
they can drink some wine while they're doing that. We usually,
you know, we'll do that a few weeks before Christmas.
We actually have a date for that, although we don't
have a lot of the plans in place. That's taking
(25:24):
place on December eleventh, So if someone has a desire
to have some wine and maybe paint some some art
right before the holidays. That's also something we could hook
them up with.
Speaker 1 (25:37):
Do a lot of these fundraisers start with volunteers coming
up with an idea. Yeah.
Speaker 2 (25:43):
In fact, the the painting SIP was totally a volunteer idea. Again,
we were sort of in that COVID where you know,
all fundraising for us stop because all we did before
was in person, and we sort of were all sitting
around and some one of our volunteers said, Hey, could
we do this? And I had known Christy from past
(26:04):
positions that I had held, and I called her and
sort of ran with it. And the Kavocs at the
Cavoc Winery are great friends of our program and always
are so kind and generous, uh, with their with their
time and with you know, the wine that they're able
to provide for the event. So yeah, that was very
much volunteer uh driven and created by our volunteers, and
(26:27):
we've just sort of continued to run with it over
the Purple Party.
Speaker 1 (26:30):
How did that start the Purple Party?
Speaker 2 (26:32):
Again? Joe Beth Barr is one of our board members,
has been for many many years, and uh, this was
an idea of her so again sort of a volunteer.
I led idea and this was set around one of
her birthday celebrations, and she had put together this idea where,
(26:53):
you know, we could have a purple party because she
loves the color purple, and I know it's such a
wonderful color. But except for the Ravens, yes, that is true.
But you know, she and her her daughter Jamie really
run the entire event for us. They do a great job.
And as you said, that's another volunteer based though.
Speaker 1 (27:14):
You said the Comedy for a Cause started eight years ago,
how did that start?
Speaker 2 (27:17):
So that was before I started, So I don't really
know all the history of that one, but I know
I think the past executive director had a good relationship
with David k from Slapstick Productions, and this was an
idea that we could get a group of people together
have fun but at the same time support a good cause.
And it's just sort of, you know, grown and continued
(27:38):
to grow from there.
Speaker 1 (27:39):
And this year it's going to be on Saturday, November first.
More details are coming soon. You're just kind of in
the you know, the beginning phase, but you want people
to you know, make plans, you know, save the date
as they like to say, Kennedy Township Volunteer Fire Department,
McKee's Rocks. Get more information on the website. All right,
we only have about a minute left. So what is
the most important thing you want people to know, either
(28:01):
about the disease or about some of the fundraisers you
have coming out.
Speaker 2 (28:05):
Well, I think if someone has my c in Gravis,
just that you're not alone. There are resources out there
like ours. Call us and we will get you connected
in with people who can help you. Let me give
the phone number and email address one more time for
one two five six six one five four five or
MGA office at MGA WPA dot org. And in terms
(28:30):
of the fundraiser, just if you want to have a
good time, give us a call. We'll get you all
set up with tickets and we really hope to see
you there.
Speaker 1 (28:38):
Comedy for a cause, helping out the mist Any of
Gravis Association of Western Pa. Jim Joyce always a pleasure.
Good luck with your event.
Speaker 2 (28:45):
Thank you, Johnny. I really appreciate the time.
Speaker 1 (28:47):
As always, if you have any comments, concerns, or an
idea for our future program, please email us from this
radio station's website. I'm Johnny Hartwell, thank you so much
for listening.
Speaker 4 (29:08):
Marti Graffer Hope was coming. I'm Bonnie Diver, cancer survivor
and founder of hair Peace Charities. Joining us at Marti
Graffer Hope on March first, Celebrities work to earn the
crowns of King and Queen of Marti Grass. There's New
Orleans band, great food. Get tickets and learn more about
our programs at Hairpeace dot org.
Speaker 2 (29:27):
Hi.
Speaker 3 (29:28):
I'm Ryan Blaney, a third generational race car driver, and
we dedicate a lot of our time to going as
fast as possible. My Grandpa Loo is the reason why
my dad and I started racing, and I'm really proud
to follow on his tracks. But when my grandpa was
diagnosed with Alzheimer's, it was a very unexpected bump in
the road for us. I've learned a lot on this
journey with my Grandpa Lou, and the memories of my
grandpa will always be with me. It's important to notice
(29:48):
if older family members are acting differently, experiencing problems with
their memory, or.
Speaker 1 (29:52):
Having trouble with routine tasks.
Speaker 3 (29:54):
Talking about Alzheimer's can be really tough, but if you
notice something, have a conversation with your loved one, encourage
them to see a doctor or offer to go with them.
Early detection of Alzheimer's can give your family time to
explore support services, make a plan for the future, and
access available treatments. The Alzheimer's Association provides care, support and
research to help you take control of the situation with
your family and manage the disease together. If you or
(30:17):
your family are noticing changes, it could be Alzheimer's. Talk
about seeing a doctor together. Visit alz dot org slash
time to talk. A message from the Alzheimer's Association and
the ad Counsel
And welcome in. This is a public affairs program shedding
the light on the interest, issues and concerns of the
greater Pittsburgh area. Good morning to you. My name is
Johnny Hartwell your host today. My guest is Jim Joyce,
the executive director of the Mythenia Gravis Association of Western Pa.
Mister Joyce, how are you, sir?
Speaker 2 (00:21):
Doing great? Johnny? Thanks again for having me in.
Speaker 1 (00:23):
It's been a minute.
Speaker 2 (00:24):
Yeah, probably about a year, I think, So what's going on?
But it's great to see you.
Speaker 1 (00:29):
Well, I'm glad you're back in here. So what have
you been doing over the last year. Anything in your organization?
It's the little organization that can you do so many
things and you have just a skeleton crew, but you
do so many great things for the organization.
Speaker 2 (00:44):
Yeah, we're really proud of the support we give to people.
With my CEO Gravis. We do a number of different programs,
support groups, both in person. We added a new virtual
support group this year for people who may not be
able to get out to our support group in person
or who may live out of the area. Were doing
a lot of education support programming. So yeah, like you said,
we're a pretty small organization in terms of staffing, but
(01:07):
we cover a big geographic footprint and we help a
lot of people, for sure, a.
Speaker 1 (01:11):
Lot of creative fundraisers. That's why I love having you
come in because you always have some sort of creative
endeavor to talk about.
Speaker 2 (01:18):
Yeah. Absolutely, And we had our Purple Party in the spring,
which went great, you know over in Carnegie Joe Beth
Barr and her daughter Jamie Stivers host of that for us.
We always take part in the high Mark Walk in
June and coming up this fall and I'm glad we
have a chance to talk about it. Is our two
thousand and five Comedy for a Cause fundraiser, which we're
(01:39):
really excited about.
Speaker 1 (01:40):
And you have it on a Saturday night we do.
Speaker 2 (01:42):
Yeah, we're having it on Saturday, November first this year.
Put it a little bit later in the year. We're hoping,
you know, we get it past a lot of the
things that take place in the fall, but before the
holidays we'll get a good crowd for the event.
Speaker 1 (01:54):
Is David k back on board.
Speaker 2 (01:55):
Yeah, David from Slapstick Productions is organizing the comedians for us.
He's still putting together the lineup, but he always does
such a great job. David's a great partner for us.
Speaker 1 (02:06):
All Right, if somebody wants more information on the organization
or some of your fundraisers. What's your website again.
Speaker 2 (02:11):
It's www dot MGA, WPA, dot org.
Speaker 1 (02:17):
Okay, all right, let's talk about my cenia gravis. Tell
us everything we need to know.
Speaker 2 (02:21):
Sure, yeah, So, my cea Gravis is an autoimmune neuromuscular disease.
It's chronic in nature. Right now, there is no cure,
but fortunately over the last several years there's a lot
more treatments, so people can live with this disease, live
a pretty normal lifestyle once they get their symptoms in order.
But really it attacks the person's volunteer voluntary muscles. So
(02:43):
some people will have the ability taken away in terms
of their movement of their arms and legs. Others may
have difficulty breathing or swallowing. A lot of times someone
may have drooping in their face, their eyelids. It's called
the snowflake disease because it impacts every person a little
bit differently, but it really focuses on those voluntary muscles.
(03:06):
So people you can live with the disease, but organizations
like ours really try to help them, support them, work
with their physician team to really get them into a
good treatment pattern so they can live a pretty normal lifestyle.
Speaker 1 (03:19):
You know, it's amazing how the advances in science has
really take on autoimmune diseases and really have improved people's lives,
and we're seeing that with mycene AGGRESSIONYA.
Speaker 2 (03:30):
Absolutely Again, for many, many years and really decades, there
weren't a lot new treatment, a lot of new treatments
as it related to my ceo gravis. But just within
the last three or four years, there's probably three or
four new treatments. So it's an exciting time not to
have the disease. But at the same time, there is
hope for people who have it because if one treatment
doesn't work for them, there's others that they can try.
Speaker 1 (03:52):
And it hits different ages.
Speaker 2 (03:55):
Yeah, my cleo gravis is not really focusing on one
specific age group, race, male or female. So we've had
individuals in their twenties that we work with up through
their eighties and nineties.
Speaker 1 (04:11):
So there's not any initial symptoms or is there.
Speaker 2 (04:14):
There are symptoms, and many times it's misdiagnosed because it
can many times present itself almost like a stroke. People
may have slurred speech, as I said before, they may
have some facial droopage, just overall weakness in their arms
and legs. So you know, it takes a while sometimes
for it to be diagnosed. But once they're diagnosed.
Speaker 1 (04:34):
Oh is it diagnosed?
Speaker 2 (04:36):
Usually through like different blood tests and things like that,
and you know, I think physicians many times will then
go down a list sort of check off some things
that you know, they can roll out like maybe they
had a stroke or something along those lines, and then eventually,
you know, they get to the point where they diagnose
them with my ceogravis.
Speaker 1 (04:54):
And now tell us a little bit about your organization.
Speaker 2 (04:56):
Yeah, so we were founded in nineteen fifty five, so
we're actually celebrat our seventieth year of helping people. As
I said before, cover a pretty large geographic footprint. We
cover twenty six counties in western Pennsylvania plus parts of
New York, Ohio, West Virginia, and Maryland, and we really
focus on three specific areas of supporting people. We focus
(05:20):
on education, advocacy, and support, and we do that through
a number of different programs, both in person virtually. We
have telephonic interventions, especially for people who are newly diagnosed,
we can hook them up with one of our volunteers
who can sort of walk them through what they may
experience with this disease, help them establish a good list
(05:43):
of questions to take back to their physician, because that's
something we really stress. We're not meant to take the
place of their physician and other members of their healthcare team.
We provide a supplement we provide when they visit their
physician if they have questions or they need some additional support.
That's where we sort of come in and work hand
in hand with their care team to make sure they're
(06:04):
getting that extra support.
Speaker 1 (06:06):
And because the disease manifests itself in various forms, it's
probably comforting for people who may have initially got the
disease or got the diagnosis to know that they're not
alone and that there are other people who are and
they probably have a lot of questions that maybe a
physician doesn't have time to answer or you know, to
(06:26):
address their concerns. So that's where you step in and
educate them.
Speaker 2 (06:30):
Correct And the other thing that's really unique is that
MYCEO graphics is a pretty rare disease. It impacts probably
one in every eighty thousand people, So it's not something
unless someone has the disease or maybe knows someone who
has the disease. Most people have never heard of myceiographs
unless it's impacting them directly in some way. So yeah,
(06:51):
as you said, when they're diagnosed, many times people feel
isolated alone because number one, they've probably never heard of
the disease. Number two, the people around them, their family, friends,
people they work with probably haven't heard of it either,
so they sort of have that loneliness and isolation. So
that's where we can step in and you hit it
right on the head.
Speaker 3 (07:12):
You know.
Speaker 2 (07:12):
The physicians do a great job that maybe don't have
the time to spend hours with an individual sort of
walking them through the disease process, helping them understand the disease.
Speaker 1 (07:22):
They have the time to educate the caregivers or loved
ones of people who are supporting that person.
Speaker 2 (07:27):
Yeah. Absolutely, and that's part of our mission is to
not only provide that support to the patient, but also
their family and friends and also healthcare professionals as well.
Because it is such a rare disease. Unless someone's really
specializing in my snea gravis, they may not know a
lot about the disease, so our goal is to really
help them understand it better so they can provide better
(07:47):
treatment to their patients.
Speaker 1 (07:49):
And you mentioned advocacy, So what do you do for that?
Speaker 2 (07:53):
Yeah, so we are involved in a lot of different
research studies. We try our best to work with insurance
companies or equip our are the people we support because
many times as these treatments are coming their new treatments,
they may not necessarily have approval from the insurance company yet.
So we work with the patient, with the physicians to
(08:13):
really be able to connect with their insurance companies, show
why this is important for that person to have this treatment,
and then try to work with them to accomplish that
goal of getting that treatment. We also are working more
and more with elected officials to really stress the importance
of providing the treatment, paying for the treatment, understanding what
(08:34):
my cenia gravis is. And then also with people's employers
because again, if someone would get this disease in their twenties, thirties, forties,
they may have a lifetime of work ahead of them,
and they may have days where they have a hard
time getting out of bed because they're just so weak
or their muscles are not responding the way they would
(08:54):
like them to. So really trying to quip that person
to be able to talk to their employer, explain what's
going on on, and get a plan in place for
them so they can be supported in their work environment.
Speaker 1 (09:05):
It's a chronic disease and there's no known cure correct
and so you know, they will have good and bad days,
and so they could go to work and be a
very productive person at their employer for their employer, but
you're like you said, there's going to be days where yeah,
it's just it's going to be difficult.
Speaker 2 (09:21):
Yeah, And most people, you know, when they're diagnosed, they
are going to have some symptoms that aren't in the
best control. And that's when we try to help them
work with their physician, get on a good plan in
terms of treatment, and then also educate them on you know,
knowing their own body. If they have a day where
they're doing a lot of strenuous activities, they may need
to take it easy the next few days. The summer
(09:44):
that we've had this is not great in terms of
a person with a chronic illness. This heat and humidity
can really wear a person down. Even if you don't
have a cry. I think you know, people can feel
pretty exhausted based on you know, just how overwhelming the
heat has been this summer. That's even amplified more with
someone with a rare disease or chronic illness like mice
(10:05):
CEO gravis. So really trying to help them get a
game plan in place so they can properly prepare, so
they know, hey, I have this to do today, I
may need to take it easy tomorrow in order to
help myself recover from what I did earlier in the week.
Speaker 1 (10:20):
You mentioned three pillars education, advocacy, and what was the
third support? Support? Okay, yeah, and so what do you
do to support the individual?
Speaker 2 (10:27):
So we offer another well, obviously, you know, just the
day to day things, them calling into the office, us
trying to connect them with different resources. But in terms
of formal support programming, we offer an in person support
group on a monthly basis where people can come. Again,
we invite the patient, their family members, other members of
their care team, and that's just really a conversation. Sometimes
(10:49):
we'll try to insert specific education, but at the same
time we really try to let the patients drive whatever
they want to talk about. In that support group. Recently,
we just started a virtual version of that. We had
a gentleman call in. He has some counseling background and
he was just recently diagnosed with my CEO gravis and
was just having a hard time getting to and from
(11:12):
different places. So he reached out to us and said, hey,
would you be willing to help me get a virtual
support group up and running, which we were thrilled. We
were getting more and more calls from people outside of
Western Pennsylvania who were looking for support groups but didn't
necessarily want to travel you know, hours to get to them.
So we started that in June, and we've had, you know,
(11:33):
a decent start. I think we've had like six or
eight people participating on a regular basis for those virtual meetings.
And then, as I said before, we also have some
one on one telephonic counseling that's available where someone can
be called by one of our volunteers who's also a
nurse who's worked with people with my cenio gravis for
(11:54):
a number of years and really helped them learn a
little bit more about the disease. But then also so
you know, prepare for upcoming doctor visits, things like that, and.
Speaker 1 (12:03):
You have support groups what once a month or so?
Speaker 2 (12:06):
Yeah, So our in person support groups on a monthly basis,
our virtual support groups right now are two times a month.
We're trying to really frontload a lot of those so people,
you know, get used to coming to them, get used
to participating, and then we'll sort of see going forward
if we'll continue to do them twice a month, or
maybe we'll back off to once a month with those
as well.
Speaker 1 (12:24):
It makes a lot of sense because you have such
a large area. You're the you know, my scene of
Gravis Association Western Pa. But like you said, you're you're
spilling into other states and so you know, it's very
difficult for somebody maybe from ash to Buela that come
into to Pittsburgh. Yeah, absolutely a meeting. So that makes
a lot of sense.
Speaker 2 (12:42):
And it's interesting I think, you know, as we've sort
of expanded our programming and especially our online social media presence,
we've gotten calls from across the country people looking for support,
and we've actually had individuals from Australia and parts of
Europe reach out to us the email, not necessarily looking
for support, but just looking to tell their stories. So
(13:04):
we try to really help them, you know, be able
to communicate and sometimes that's very therapeutic as well, just
being able to tell what's happened to you and how
it's impacted your life. So we look at that as
part of our support system as well.
Speaker 1 (13:17):
All Right, I have more questions about the disease, but
I don't want to get too far without talking about
the MGA Comedy for a cause it's coming up in November.
Tell us everything we need to know.
Speaker 2 (13:26):
Yeah, So it's as I said before, it's taking place
on Saturday, November the first, and we changed the venue
this year. We had the last few were out in
Westmoreland County and we had a lot of our supporters say, hey,
could you maybe do something in Alleghany County, So we
decided to listen to them. We're actually having that at
the Kennedy Township Fire Department, their banquet hall that's over
(13:47):
in McKees Rocks, so a nice sort of central location.
As I said before, we're working with David K and
Slapstick Productions. David's worked with us for years on this
on this fundraiser. Yeah, how many years had Yeah, so
this we've sort of missed a few years with COVID
and some other things.
Speaker 1 (14:04):
I wonder why.
Speaker 2 (14:05):
I wonder why, but I believe this is our eighth,
eighth or ninth comedy for a cause. So it's it's
always very well received. People have a great time, and
we're really excited about it. We're throwing a few new
wrinkles in this year. We have our regular general admission
ticket and those are forty dollars and that includes, as always,
(14:28):
the buffet, dinner, the dessert table. We'll have a number
of different you know, raffles and things like that. But
this year we decided to also have a VIP ticket,
which is fifty dollars, and that gives you the option
of coming about an hour before the program, Uh, have
some wine and cheese, Uh, you know, sort of interact
(14:48):
with some of the leadership from mg A.
Speaker 1 (14:50):
And your first in line for the dessert.
Speaker 2 (14:52):
Yeah that's right, you get you get the fast pass
for the dessert table. Yeah. So we're really excited about it.
This year is a byob event. We're not having a
cash bar, so we thought that may be a great
way as well. If someone comes for the wine and
cheese reception, they might have the ability to purchase some
of their BYO B bottles from the people providing the
(15:14):
wine at that event.
Speaker 1 (15:15):
And what is the money, the money that you raise,
what is it earmark for?
Speaker 2 (15:19):
Yeah, so all services that MGA offers are free. We
don't charge people for any of our support programming and
of our education programming, all of our things we do online,
social media. Everything we fundraise goes towards you know, those
free patient support services. So anything we do, you know,
(15:40):
gets rolled back into the support and operational costs associated
with running the organization.
Speaker 1 (15:47):
All right, if there's somebody listening who maybe just got
diagnosed or maybe a loved one, and they're interested in
maybe participating in a support group or maybe finding more
information about education, what's the process, what do they need?
Speaker 2 (16:00):
So what we normally just ask people to do. Again,
they're all free, but we usually try to have some
kind of RSVP, just so we know how many people
are coming. Because for our in person support groups, we
provide some refreshments. We just want to make sure we
have enough for everyone. And then for our online and
virtual support groups, we'll send out a link before the meeting,
so we just know we just need to know who
(16:21):
to send that to. So what we ask people to
do is just call our office and that number is
four one two five six six one five four five
and they can, you know, just let us know they
want to attend. If they get our voicemail, just leave
a message. Someone will definitely get back to them. If
they feel more comfortable. More comfortable just emailing the office
(16:42):
to RSVP, that's perfectly fine as well. That email address
is MGA Office at MGAWPA dot org. Those are the
best two ways to reach us. Someone will usually get
back to you within twenty four hours and we'll get
you all set up in terms of date, times, location,
and anything else you may have questions about related to
(17:03):
the support group or other programming that we're doing.
Speaker 1 (17:06):
And you can get more information on the support groups
and some of the things you do for you know,
the individuals on your website.
Speaker 2 (17:11):
On our website as well, and I'll give you that
address again, it's www dot MGA WPA dot org. Yeah,
there's a lot of great information on there about the
disease itself, a lot of our old past newsletters so
they can see sort of different programming we've done in
the past, and then also about our support groups as well.
Speaker 1 (17:31):
We're talking with Jim Joyce of the executive director of
the Mycenia Gravis Association of Western PA. And it's Western PA,
but it should be.
Speaker 2 (17:41):
It's much larger than westerdaa Midwest region, I guess.
Speaker 1 (17:44):
Is that what it is. So tell us a little
bit about your organization, you know, because we mentioned that
it's a smaller, smaller organization. But so tell us about
your team.
Speaker 2 (17:53):
Yeah. So, as I said before, we were founded in
nineteen fifty five, so seventy years ago, there was a
gentleman who had a family member who had my CEO Gravis.
Back then obviously didn't have as many resources in terms
of the Internet or other ways to learn about the disease.
Uh So he took an ad out in one of
the local papers, uh said, anyone who wants to learn
(18:15):
about this or who has something to add, you know,
we're going to meet at this location on such and
such a day time. And from those very humble beginnings,
you know, that's where my Senior Graphics Association was founded.
Uh So, we've you know, changed a lot over the years,
but our focus has always been on those three main
components of support, education, and advocacy. And we do that,
(18:39):
you know with a very small team. It's myself, and
then we have probably twenty five volunteers who serve in
a lot of different capacities. Uh. Some focus on the education.
Speaker 1 (18:49):
Uh.
Speaker 2 (18:50):
Some are make our cookies for our wonderful cookie tables.
Others do a lot of our uh demand tables when
we have different educational programming. They'll help us with those
types of things. And then we have a fourteen member
board who also are all volunteers and do a wonderful job,
come from a lot of different backgrounds and bring a
(19:12):
lot of different resources and tools uh to our team,
just based on their life experience and their work experience.
Speaker 1 (19:19):
Uh.
Speaker 2 (19:19):
So we probably have anywhere of you know, thirty five
forty people, uh, but all but me are volunteers. So
that's another thing that we're very proud of is that,
you know, for an organization to run seventy years primarily
just based on pure volunteerism is a you know, real
wonderful thing.
Speaker 1 (19:38):
Well, it's an attestament that you know that that your
organization has reached out and been able to reach those
individuals who are willing to volunteer and volunteer for a
long time, right right. We touched on advocacy. You know,
with budgets as far as the state and federal there's
less funds to help nonprofits. Is that something that that
(20:00):
is also the you're facing as well, or yeah.
Speaker 2 (20:03):
I mean, obviously it's always a struggle for nonprofits in
terms of where their funding is going to come from. Now,
we don't receive any federal or state money just because
again we're not billing Medicare. All of our services are free.
We do work with the local United Way chapters who
are always very generous to our organizations. We have different
sponsorship levels, so we have a lot of education sponsors
(20:27):
that really help us to sort of make ends meet
in terms of our budget. And then also the fundraising,
which we're talking about today is very critical to us.
But it's it's good that we have a nice spread out,
you know, flow of revenue coming into the organization. We're
not overly reliant on one versus the other, but all
are very important and we run a very tight ship
(20:49):
in terms of our budget. We're not the organization that's
you know, going out and throwing lavish parties or or
you know, doing things that really are outside the scope
of what our mission is. We are very mission focused.
We you know, really are here to support individuals with
my sea gravis and that's where the majority of our dollars,
if not all, of our dollars go to in terms
(21:10):
of our budget.
Speaker 1 (21:11):
You mentioned that my estandia gravis is a very rare disease.
How many individuals in the Western PA area.
Speaker 2 (21:19):
Yeah, we we help. Again, it's sort of a very
inexact number. But you know, we have an email database
made up of patients and then other people as well,
but just strictly based on you know, patients or past patients.
We're probably talking somewhere six to seven hundred individuals that
we support, and some interact with us very frequently, others
(21:43):
just more when things come up where they need some
help with something. So it's it's you know, not everyone
utilizes our organizations so often.
Speaker 1 (21:51):
Do you get it? Maybe somebody that's new who's been
recently diagnosed.
Speaker 2 (21:55):
Yeah, I think we've seen that an uptick definitely in
the past years. And I think I don't know, you know,
if people watch TV, there are a lot more commercials
related to my CEO gravis because of the new treatments
associated with it. So I think people are becoming a
little more aware of the disease, So we have seen
an uptick, and that may be from a physician perspective
(22:17):
as well. Maybe people were diagnosing a little quicker than
they used to, so we are seeing an uptick. I
would say we probably get at least one or two
calls every few weeks with newly diagnosed people, which may
not sound like a lot, but for such a rare disease,
you know, to get three or four new patients a
month is pretty significant.
Speaker 1 (22:37):
What are your standard questions? What are the frequently asked
questions you get from those individuals?
Speaker 2 (22:42):
Number one, just what resources are available? I think again,
because not a lot of people have this disease. There
aren't a lot of you know, websites. There there's a
lot of knowledge out there for individuals to really just
go and learn everything on their own, so you know
what's available to me? Who can help me do this?
(23:04):
And the other thing is it's scary because I said before,
everyone is affected a little differently by the disease, so
it's not that well, I know this person who has it,
and this is what happened, so that's going to be
exactly what happens to me as well. It's very rare
that two people have the exact same sort of disease
exacerbation as it relates to mind SEE and GRAVIS. So
(23:25):
what we really try to do is connect them with
our volunteers, set up a game plan for them, especially
as it relates to how they're interacting with their physicians,
good questions to ask knowledge about treatments, and really you know,
helping them to become a champion for themselves to drive
their health care because it's pretty critical, you know, whether
(23:46):
it's for the patient or for their caregiver to be
a champion to ask questions, and we really try to
help fill in the gaps of what those questions might be.
Speaker 1 (23:55):
You mentioned that because it's a rare disease and that
your organization isn't funded by from the federal level or
state level, that these fundraisers are are paramount to your organization.
Speaker 2 (24:06):
Oh absolutely, And again we try to have a sort
of core group of fundraisers. We try not to do
something on a monthly basis where it's just always constantly,
you know, asking for more help or asking for more support.
We try to limit these to like three or four
a year. And as I mentioned before, the Purple Party
in the spring and this comedy show in the fall
(24:26):
are really the two main fundraisers that we do. So yeah,
we rely very heavily on these being successful, and you
know that's why we're thrilled to be able to talk
a little bit about it today.
Speaker 1 (24:36):
And the high Mark Walk you do that, yeah, the
high Mark Walk, and you also do something in December, right, Yeah.
Speaker 2 (24:41):
So we also this will be i think our sixth
year because this started right around COVID as well, we
do our virtual holiday paint and Sip. So we have
a art art therapist who is a wonderful friend of
our program, Christy Walter, and she will lead an art
project and then we partner with Cavoc Winery from Carnegie
(25:03):
to provide wine, and we do everything virtually so people
don't even have to leave their home. Christy will run
through a art project that they will participate in and
they can drink some wine while they're doing that. We usually,
you know, we'll do that a few weeks before Christmas.
We actually have a date for that, although we don't
have a lot of the plans in place. That's taking
(25:24):
place on December eleventh, So if someone has a desire
to have some wine and maybe paint some some art
right before the holidays. That's also something we could hook
them up with.
Speaker 1 (25:37):
Do a lot of these fundraisers start with volunteers coming
up with an idea. Yeah.
Speaker 2 (25:43):
In fact, the the painting SIP was totally a volunteer idea. Again,
we were sort of in that COVID where you know,
all fundraising for us stop because all we did before
was in person, and we sort of were all sitting
around and some one of our volunteers said, Hey, could
we do this? And I had known Christy from past
(26:04):
positions that I had held, and I called her and
sort of ran with it. And the Kavocs at the
Cavoc Winery are great friends of our program and always
are so kind and generous, uh, with their with their
time and with you know, the wine that they're able
to provide for the event. So yeah, that was very
much volunteer uh driven and created by our volunteers, and
(26:27):
we've just sort of continued to run with it over
the Purple Party.
Speaker 1 (26:30):
How did that start the Purple Party?
Speaker 2 (26:32):
Again? Joe Beth Barr is one of our board members,
has been for many many years, and uh, this was
an idea of her so again sort of a volunteer.
I led idea and this was set around one of
her birthday celebrations, and she had put together this idea where,
(26:53):
you know, we could have a purple party because she
loves the color purple, and I know it's such a
wonderful color. But except for the Ravens, yes, that is true.
But you know, she and her her daughter Jamie really
run the entire event for us. They do a great job.
And as you said, that's another volunteer based though.
Speaker 1 (27:14):
You said the Comedy for a Cause started eight years ago,
how did that start?
Speaker 2 (27:17):
So that was before I started, So I don't really
know all the history of that one, but I know
I think the past executive director had a good relationship
with David k from Slapstick Productions, and this was an
idea that we could get a group of people together
have fun but at the same time support a good cause.
And it's just sort of, you know, grown and continued
(27:38):
to grow from there.
Speaker 1 (27:39):
And this year it's going to be on Saturday, November first.
More details are coming soon. You're just kind of in
the you know, the beginning phase, but you want people
to you know, make plans, you know, save the date
as they like to say, Kennedy Township Volunteer Fire Department,
McKee's Rocks. Get more information on the website. All right,
we only have about a minute left. So what is
the most important thing you want people to know, either
(28:01):
about the disease or about some of the fundraisers you
have coming out.
Speaker 2 (28:05):
Well, I think if someone has my c in Gravis,
just that you're not alone. There are resources out there
like ours. Call us and we will get you connected
in with people who can help you. Let me give
the phone number and email address one more time for
one two five six six one five four five or
MGA office at MGA WPA dot org. And in terms
(28:30):
of the fundraiser, just if you want to have a
good time, give us a call. We'll get you all
set up with tickets and we really hope to see
you there.
Speaker 1 (28:38):
Comedy for a cause, helping out the mist Any of
Gravis Association of Western Pa. Jim Joyce always a pleasure.
Good luck with your event.
Speaker 2 (28:45):
Thank you, Johnny. I really appreciate the time.
Speaker 1 (28:47):
As always, if you have any comments, concerns, or an
idea for our future program, please email us from this
radio station's website. I'm Johnny Hartwell, thank you so much
for listening.
Speaker 4 (29:08):
Marti Graffer Hope was coming. I'm Bonnie Diver, cancer survivor
and founder of hair Peace Charities. Joining us at Marti
Graffer Hope on March first, Celebrities work to earn the
crowns of King and Queen of Marti Grass. There's New
Orleans band, great food. Get tickets and learn more about
our programs at Hairpeace dot org.
Speaker 2 (29:27):
Hi.
Speaker 3 (29:28):
I'm Ryan Blaney, a third generational race car driver, and
we dedicate a lot of our time to going as
fast as possible. My Grandpa Loo is the reason why
my dad and I started racing, and I'm really proud
to follow on his tracks. But when my grandpa was
diagnosed with Alzheimer's, it was a very unexpected bump in
the road for us. I've learned a lot on this
journey with my Grandpa Lou, and the memories of my
grandpa will always be with me. It's important to notice
(29:48):
if older family members are acting differently, experiencing problems with
their memory, or.
Speaker 1 (29:52):
Having trouble with routine tasks.
Speaker 3 (29:54):
Talking about Alzheimer's can be really tough, but if you
notice something, have a conversation with your loved one, encourage
them to see a doctor or offer to go with them.
Early detection of Alzheimer's can give your family time to
explore support services, make a plan for the future, and
access available treatments. The Alzheimer's Association provides care, support and
research to help you take control of the situation with
your family and manage the disease together. If you or
(30:17):
your family are noticing changes, it could be Alzheimer's. Talk
about seeing a doctor together. Visit alz dot org slash
time to talk. A message from the Alzheimer's Association and
the ad Counsel
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