September 5, 2025 • 30 mins
It’s been 24 years since the 9/11 terror attacks. The unity that once brought us together has faded, but each year we honor the anniversary through the 9/11 Day of Service and Remembrance. Manny speaks with Jay Winuk, Co-founder & Executive Vice President of 9/11 Day, about the importance of keeping that spirit alive.
Plus, September is Blood Cancer Awareness Month. Leigh Clark, Sr. Director of Patient Programs at the Aplastic Anemia and MDS International Foundation, joins the conversation to share insights and resources for patients and families.
Plus, September is Blood Cancer Awareness Month. Leigh Clark, Sr. Director of Patient Programs at the Aplastic Anemia and MDS International Foundation, joins the conversation to share insights and resources for patients and families.
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Episode Transcript
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Speaker 1 (00:01):
Welcome to iHeartRadio Communities, a public affairs special focusing on
the biggest issues impacting you this week. Here's many munnos
and welcome to another edition of Iheartradios Communities. As you heard,
I am Manny Muno's and I would love a follow
from you on Instagram at iod Manny as my handle
(00:23):
at iodma Ny. It's hard to imagine it's been twenty
four years since the nine eleven terror attacks and the
unity we all felt in the days and months afterwards
as Americans has long evaporated. But on the anniversary, we
commemorate the nine to eleven Day of Service and Remembrance.
(00:44):
Let's talk about it and what it means with Jay Winnick.
He's co founder and executive vice president of nine eleven Day. Jay,
thanks for joining us. I appreciate it.
Speaker 2 (00:52):
It's my pleasure. Thank you.
Speaker 1 (00:55):
Let's talk about exactly what is nine to eleven Day.
Speaker 2 (01:01):
Well, it is the one way the nation helped to
can continue with the promise to never forget. It's a
national day of service and remembrance. Our nonprofit organization, which
also goes by nine to eleven Day, was responsible for
starting this initiative back in two thousand and two, and
(01:23):
together with the help of a lot of folks and
organizations and companies, we have grown the anniversary of nine
to eleven into the nation's largest annual day of charitable engagement.
And it's one of only two days of service recognized
under federal law, which passed in two thousand and nine.
(01:43):
And it's really a call to America to do good
deeds on nine to eleven with acts large and small,
as a way to rekindle that spirit that you reference,
that togetherness that was so spontaneous and natural and impactful
in the days and weeks after nine to eleven happened.
Speaker 1 (02:03):
This effort is personal for you, correct.
Speaker 2 (02:08):
It is, Manny. My brother Glenn Winnick died in a
line of duty and the terrorist attacks in New York City.
He was a partner at the Holland Knight law firm,
and their offices were located a few blocks from the
World Trade Center for twenty years. Glenn was a volunteer
firefighter and an EMT in our hometown on Long Island,
(02:32):
and so he helped evacuate the law offices of his
firm and then headed on foot into the South Tower
to save lives and he perished when the South Tower collapsed. So,
you know, Glenn was somebody who lived his life and
died in service to other people, and I wanted to
engage in an initiative that reflected the way he lived
(02:54):
his life.
Speaker 1 (02:55):
How do you balance that the grief so many years
later and still rem remembering and missing your brother, and
the pride you have to feel with what this day
of remembrance has become.
Speaker 2 (03:09):
It is bittersweet, Manny. You know, I have to tell
you we never forget Glenn. I'm so proud of him
every day and I think of him every day. But
the legacy that he has left is extraordinary and impactful.
Along with my co founder David Payne, we just kept
putting one foot in front of the other, hoping, just
(03:32):
hoping that this idea would resonate and take root with America,
and indeed it has, and so for that I'm extremely grateful.
It's I feel like you asked about it on a
personal level, Well, it's I feel like working on this
initiative is really the best thing that I could do
in Glenn's honor, encourage people to do good deeds for
(03:54):
other and to come together, at least on this on
this one day a year, and and so that's very
meaningful and gratifying for me.
Speaker 1 (04:03):
Next year will be the twenty fifth anniversary. Obviously, I
imagine that would be an enormous thing in the company,
in the country. And on nine to eleven, we obviously
have the ceremonies there at Ground zero, at the Pentagon
in Pennsylvan Shanksville and across the country. But do you
think the further away we get from the attacks, the
(04:25):
less the less Americans really feel of how we all
felt in those days and weeks afterwards. We've forgotten how
it impacted all of us.
Speaker 2 (04:37):
Well, we wonder about that all the time. Certainly in
the early years when we were starting this initiative, you know,
we looked at ourselves, those of us who were responsible
for getting this observance underway, wondered would it matter in
five years, ten years, fifteen years, would it matter in
twenty five years? But I have to tell you it does.
There have been about one hundred million people born born
(05:00):
in this country. Many since nine to eleven happened to
one hundred million people, And of course they have no
direct memories of the attacks, nor of the way the
nation came together that I have to tell you when
when we see about the response of young people to
engage in service of the Day of Service each September,
(05:23):
it's very inspiring and encouraging. They really want to know.
And I think that part of the magic here is
the combination of remembrance and service. You know, give give
people an opportunity to do something meaningful as a way
to remember, as a way to impact the world around them,
their communities or whatever it may be. And it's amazing
(05:46):
how it resonates with people. But we do those of
us who were here twenty four to twenty five years ago,
I think we have a responsibility to make sure that
future generations understand just what went on and what lessons
we can take out of that tragedy. And then the
way people came together.
Speaker 1 (06:03):
Is that the biggest challenge in sustaining the momentum for
nine to eleven day, the further away we get from
the actual.
Speaker 2 (06:11):
Day, I suppose, but you know, we have people from
all fifty states participating every year. It is by far
the largest day of service in the country. Tens of
millions of people actively engage in the observance by doing
good deeds and so that is very encouraging. Our organization
about ten years ago started staging signature service projects around
(06:35):
the country. This year, we'll be staging large scale meal
packs in twenty four cities throughout the United States. And
the response to that from volunteers and companies and municipalities
and faith based groups and sports teams to participate in
those large scale meal packs. I mean, just this coming
(06:57):
nine to eleven, more than nine million meals going to
be packed in one day to feed people who are
risk of hunger in this country. That's just one example
of how remembrance and service on nine to eleven are
positively impacting those in needs. So I think it's a
good sign.
Speaker 1 (07:16):
We've talked about how personal this is for you. Has
there been Has there been a personal moment in these
years with nine to eleven Day that really stands out
for you on a personal level?
Speaker 2 (07:29):
Oh? So many, I have to tell you. It's really something.
You know, My brother Glenn, my late brother Glenn, had
so many wonderful people in his life, family and friends
and colleagues, and so many reach out each nine to
eleven and continue to remember. And that's very meaningful too.
The work that I get to do on nine to
(07:50):
eleven Day, I have a front row seat to an
amazing outpouring of generosity and humanity and passion. Perhaps though
most personal, is seeing how my kids have come to
appreciate both how special their uncle was one of them.
(08:11):
My son Justin was only four, my daughter was yet
to be born when he died, and their understanding of
not only the way Glenn lived his life, but the
legacy that he has left behind. And to see how
the country rallies around this observance each year, to me,
that's very personally heartwarming because they are the next generation.
Speaker 1 (08:35):
A couple more minutes here with Jay Winnett, co founder
executive vice president of nine to eleven Day, what role
do you see as schools and local communities that maybe
are far away from ground zero the Pentagon Shanksville have
it in continuing to grow this anniversary, in this day
(08:55):
of service every year.
Speaker 2 (08:59):
It is gratifying to see that more and more schools
are built into the curriculums teaching about nine to eleven.
But I do think we have a long way to
go to ensure that it is taught universally and properly,
that it's not just another day on the calendar, and
we see examples every year of more and more schools.
(09:21):
And we have a robust education program with free downloadable
lesson plans on our website nine to eleven day dot
org that are used increasingly in classrooms all over the country.
There are college campuses that are doing service projects, in
part funded by a program that we do with AmeriCorps,
(09:43):
where college students everywhere, about eighty campuses this year alone
are going to be doing service projects either on campus
or in the communities where those colleges are based. So
I think there's the promising future in terms of education
and nine to eleven. Our friends at the Nine to
eleven Museum have a robust education program for young people.
(10:05):
There's a lot of efforts being made by a lot
of organizations to ensure that nine to eleven is not
forgotten and that the lessons coming out of nine to
eleven are learned generation after generation.
Speaker 1 (10:17):
Do you come across people who are skeptical maybe of
the connection between public service or performing a good deed
as having anything to do with remembering the terror attacks.
Speaker 2 (10:30):
We had very little pushback, I can tell you, as
soon as people realize that it is to reflect the
way the nation came together. You know, this was a
bipartisan effort then, and when you know, if you talk about,
let's say, the political environment that is often very divide
in this country, every kind of person with every kind
(10:52):
of political background or geographically, we were so spread out
religious differences, sexual orientation differences, economic differences. Nine to eleven
touched everybody in this country, no matter who you were,
no matter where you were, and of course, people from
more than ninety countries perish in the attacks. So we
were all hit in one way or another by this tragedy,
(11:15):
and it is a time to come together. We do
get virtually no real pushback on the connection between service
and nine to eleven, because it was service. It was
good deeds that helped bring us out of the tragedy
after nine to eleven. And as soon as people understand that,
they understand the sensibility of an observance like this, and
(11:35):
it's why it has grown into the nation's largest day
of service, Jay, how do.
Speaker 1 (11:39):
You navigate that, especially in today's increasingly divided country. Those days,
those weeks, We've talked about it several times in our
conversation already. It was really even for somebody cynical. The
last time we were all united as Americans. You mentioned
all of those things, politics, were and sexual none of
(12:01):
it mattered. We all came together as a country. And
how do you walk that fine line in this day
and age on this anniversary every.
Speaker 2 (12:09):
Year, you know, it's gotten to the point really where
you know that famous line, if you build it, they
will come. We are presented. We have presented this opportunity
to the nation, and the nation has responded by the millions.
You know, people really are looking for something productive and
meaningful to do as a way to mark the day.
(12:31):
And I think most people appreciate the opportunity to put
aside the divisiveness and realize that we are all Americans,
that everybody needs and helping hand once in a while.
Most people in this country have an opportunity to make
a difference with x large and small, and it really
(12:51):
does resonate with people. Of course, we all wish for
more of it, for the rhetoric to be toned down
and people more and more opportunities to make a difference
for others, but especially on this day, people get it.
People get it, and it's very heartwarming and impactful.
Speaker 1 (13:11):
Speaking of that, what do you hope the impact is
this year, what do you see as a single person's
day of service or good deed.
Speaker 2 (13:22):
Well, the impact is going to be tremendous.
Speaker 3 (13:24):
You know.
Speaker 2 (13:24):
As I say, tens of millions of people participate. And
it's not just in these you know, meal packs of
course that we stage. I mean we'll have more than
thirty thousand volunteers just at the meal packs that we're
staging as examples of the way that people can make
a difference on nine to eleven. But boy, you pick
a thousand people and you'll find a thousand good deeds.
So the impact is tremendous. I mean it's an army
(13:48):
of people, of tens of millions of people, either in
self directed ways or in organized activities with the municipalities
or their faith organizations or their employers. I mean, there
are more than seven hundred companies in this country that
are just sponsoring our MUNE packs alone, much less all
the other things that corporate America. I mean, it must
(14:11):
be the largest day of corporate volunteersm in the country too.
It's really really something. So, you know, and with the
twenty fifth anniversary coming up next year, I think there's
going to be an extraordinary outpouring of goodwill but also learning.
You know, where do we go from here?
Speaker 1 (14:31):
Nine eleven day dot org is the website if you
want to find out more information, if you want to donate,
nine one one day dot org. And I'm looking ahead
to next year. I can't imagine what that's going to
be like. Jay, I really appreciate the time, everything you've done.
Best of luck this year and in the years beyond.
Speaker 2 (14:53):
Thank you, it's a pleasure to speak with you.
Speaker 1 (14:55):
It's Jay Winnick, co founder and executive vice president of
nine eleven Day. Just a reminder if you have any
questions or comments, you can follow me on Instagram at
iod Manny is my handle at iod m a n Y.
September is blood cancer Awareness month. But exactly what does
(15:18):
that mean? I thought we'd talk about it as we
bring in Lee Clark, Senior Director of Patient Programs, a
Board certified patient advocate with the Aplastic Anemia and MDS
International Foundation. Lee, I appreciate the time, Thanks for joining us.
Speaker 3 (15:33):
Oh, thank you so much, Manny. We appreciated the invitation
and I'm delighted to be able to talk about blood
cancer awareness.
Speaker 1 (15:42):
Well, let's start off with, I guess the simplest question,
why September? Why is this month designated blood Cancer Awareness Month?
Speaker 3 (15:51):
Store great question, Thank you so much. The Leukemia Foundation
actually began Blood Cancer Awareness Month in September of twenty
ten as a month to be able to recognize blood
cancers which most people were not aware of and still
(16:15):
are not today. So it was actually started by the
Leukemia Foundation in September of twenty ten.
Speaker 1 (16:22):
And leukemia is probably, I'm guessing, the best known blood cancer,
but there are many others, are there not?
Speaker 3 (16:31):
Absolutely so, when most people think of, you know, blood cancer,
they think of leukemia, lymphomas, myolomas, but there's so many
other blood cancers that are not known, and there's actually
over one hundred different blood cancers. And the blood cancer
(16:53):
that our organization supports is milo dysplastic syndromes, where sometimes
people will refer to as MDS, and there's only ten
to fifteen thousand that are new cases that are diagnosed
each year in the US, and it is a rare
(17:16):
blood cancer.
Speaker 1 (17:18):
What exactly is a plastic anemia or I'll refer to
as an MDS because I won't be able to pronounce
the full name what exactly is that?
Speaker 3 (17:28):
Yeah, so a plastic anemia is actually not a blood cancer.
So MDS or milodysplastic syndromes is the blood cancer that
our organization support. So it's actually where your bow marrow
is not producing healthy blood cells, which then causes anemia
(17:53):
and other symptoms for patients. And there are treatments available,
but the only known cure at this time is a
bow marrow transplants.
Speaker 1 (18:05):
What are some of the symptoms of this? How does
someone end up going to a doctor and get diagnosed
with an MDS?
Speaker 3 (18:13):
That excellent question. So most patients don't even really know
they have MDS. It can be found through a blood test.
You go in for a physical and have a CBC.
A lot of times patients will say they were feeling
fatigued or they may notice they were having bruises on
(18:37):
their legs unexplained. So usually the diagnosis starts with some
type of symptom of the disease, which then leads to
tests being done, a referral to a hematologist or an oncologist,
and then further testing is done. But ultimately the disease
(18:58):
is diagnosed through a bone marrow biopsy.
Speaker 1 (19:02):
And the you mentioned that there's there's no real cure,
but what kind of treatments does someone with MDS star?
Just a bone marrow transplant.
Speaker 3 (19:13):
A bone marrow transplant as of today, is the only
known potential cure, but there are other treatments that are
available for patients that help with the symptom management of
the disease.
Speaker 1 (19:28):
How does your group empower patient? I guess caregivers are
a key part of the whole process as well.
Speaker 3 (19:35):
Absolutely so. Once someone is diagnosed, everyone that knows and
loves them is diagnosed as well. So through our organization,
we are looking to empower patients with information about their diagnosis,
(19:55):
what they're what the treatment options are that are available,
providing them with resources where they can get connected with
others who have MDS. With the disease being so rare,
it's really hard for patients to be able to connect
with another patient. And then we you know, through our
(20:19):
educational programming. Each year we host patient and family conferences.
We have our webinars, which are interviews with experts about
different topics that would be important for patients and their
loved ones their support networks to know. We also host
podcasts such as the one that We're on today. But
(20:41):
the other piece that's really important that we do is
we also invest in research, making sure that the latest
is being done and looking for patients to understand that
there are things that are being done to help advance
treatments and a cure that may be available for everyone.
Speaker 1 (21:06):
Do these types of I guess they're known as marrow disorders.
Do they primarily affect a certain demographic?
Speaker 3 (21:15):
So it depends on For mds, the median age of
diagnosis is in your early seventies. It's not discriminative of
whether you're a male or female. However, with all of
that said, there are children who are diagnosed young adults,
(21:37):
but primarily it has been known as a disease of
older individuals, but that doesn't mean that other age groups
are not diagnosed.
Speaker 1 (21:48):
Is there a cause? Do we know what causes these
types of blood cancers.
Speaker 3 (21:53):
Sture? So for MDes, there are you know a few
things that experts have been able to determine. One of
them is environmental exposures. It could be a known cause.
Speaker 1 (22:08):
A couple more minutes here with Lee Clark, Senior Director
of Patient Programs, a Board certified patient advocate, with the
aplastic anemia and MDS International Foundation. Talk to me about
how you became part of this group and a patient
advocate for something like blood cancers and MDS.
Speaker 3 (22:29):
Sure, so, great question, and I have been very proud
to be a staff member here at the Foundation for
the past eighteen years. I actually had worked in the
field previously with individuals with developmental disabilities as an advocate,
(22:50):
So that's how I came upon the organization through a
former colleague and and you know, learned about the foundation
all that they do to help support patients and their networks.
(23:11):
And I've been very proud to work here for an
organization that is all about patients first, supporting patients, supporting
their network, working side by side with healthcare providers, and
making sure patients have the very best in education about
(23:32):
their diagnosis, and providing supports.
Speaker 1 (23:36):
You mentioned a couple of times that providing that support,
empowering patients for MDS, for example, because it's so rare,
is one of the challenges. How I guess popular is
the wrong word, But how prominent are these blood cancers
when we think of it in the scope of all
of all of the other cancers.
Speaker 3 (23:57):
Sure, So, for MDS there approximately ten to fifteen thousand
individuals diagnosed each year in the US, so MDS is
known as a rare disease and it can be very
difficult for patients finding supports. It can be very difficult
(24:19):
finding someone who has MDS for you to be able
to connect with and talk and share experiences. Some of
the other challenges with MDS is finding a physician who
is an expert in MDS. It's very important for patients
(24:42):
to find someone that understands MDS. It can be very
challenging to manage and to treat. And one of the
things our organization is able to do is help connect
patients with these expert physicians to make sure that they're
getting second opinions and then there and that they're getting
(25:04):
the very best care. One of the things that we
hear a lot is from patients is MDS isn't an
invisible disease. So patients look fine, you may not really
know that there is something that is going on with them,
and that can be very challenging for for patients. But
(25:29):
you know, through our organizations, through our educational programming UH,
through our virtual support groups UH, through our we have
something that's called our peer support network, which is where
we can connect patients one on one with another patient
to be able to talk about what they're going through
(25:50):
and be able to share experiences. We're able to help
patients find answers to their questions, support for what they're
going going through, and hope for a future.
Speaker 1 (26:04):
Do you find that most primary care physicians lack information
about blood cancers and mds and things like that.
Speaker 3 (26:17):
Yes, it's not their area of expertise. Sometimes I hear
from patients quite often they went in for a routine
physical with their primary care physician and when they got
blood work back, the primary care physician noticed something was
(26:38):
off with the blood work and then ended up referring
them on to a hematologist oncologist where they did more testing.
So sometimes the diagnosis starts out of physical Sometimes folks
don't even really realize there's something going on inside of
(27:00):
them because they may not be exhibiting symptoms that you
would think of when you hear somebody has a blood cancer.
So a lot of times, right it starts with the
simple I went in for a physical how to CBC.
Or they may go to the doctor because they've noticed
they have extra bruising that may happen that would lead
(27:25):
them to go, but usually it's there's a diagnosis would
be sometimes through the primary care physician that then prompts
the going to see a specialist.
Speaker 1 (27:37):
We mentioned September is blood cancer Awareness month. How do
you hope to make the general public aware of blood
cancers and what impact do you hope to have this month?
What do you want the public to know.
Speaker 3 (27:54):
We'd like the public to know that you know there
are many blood cancers that our patients are being diagnosed.
Our hope is is that with patients hearing about for
us MDS, it would spark them to think about if
(28:16):
they're suffering from anemia or they're having symptoms, to seek
a second opinion because MDS would be something that they
may want to inquire about. Our goal is also to
help our community, the MDS community, make awareness about their diagnosis,
(28:41):
give them something to empower them, letting people know what
is going on with them, and hopefully through education, we're
able to help others who may be in the process
of being diagnosed or received a new diagnosis be able
to find us.
Speaker 1 (29:01):
And sometimes it's that peer support and the community that
can be the difference between a successful treatment and an
unsuccessful treatment. Lee really appreciate the time. Really appreciate the time.
Best of luck.
Speaker 3 (29:13):
Thank you so much for having me have a great day.
Speaker 1 (29:16):
That's Lee Clark, Senior director of Patient Programs at the
Aplastic Anemia MDS International Foundation. The website is a A
m DS dot org a A m d S dot
o RG. As always, I'd love a follow on Instagram
and I follow back at io D Manny is my
(29:39):
handle at io D m A n n Y. And
that'll do it for another edition of Iheartradios Communities. I'm
Manny Muno's until next time.
Welcome to iHeartRadio Communities, a public affairs special focusing on
the biggest issues impacting you this week. Here's many munnos
and welcome to another edition of Iheartradios Communities. As you heard,
I am Manny Muno's and I would love a follow
from you on Instagram at iod Manny as my handle
(00:23):
at iodma Ny. It's hard to imagine it's been twenty
four years since the nine eleven terror attacks and the
unity we all felt in the days and months afterwards
as Americans has long evaporated. But on the anniversary, we
commemorate the nine to eleven Day of Service and Remembrance.
(00:44):
Let's talk about it and what it means with Jay Winnick.
He's co founder and executive vice president of nine eleven Day. Jay,
thanks for joining us. I appreciate it.
Speaker 2 (00:52):
It's my pleasure. Thank you.
Speaker 1 (00:55):
Let's talk about exactly what is nine to eleven Day.
Speaker 2 (01:01):
Well, it is the one way the nation helped to
can continue with the promise to never forget. It's a
national day of service and remembrance. Our nonprofit organization, which
also goes by nine to eleven Day, was responsible for
starting this initiative back in two thousand and two, and
(01:23):
together with the help of a lot of folks and
organizations and companies, we have grown the anniversary of nine
to eleven into the nation's largest annual day of charitable engagement.
And it's one of only two days of service recognized
under federal law, which passed in two thousand and nine.
(01:43):
And it's really a call to America to do good
deeds on nine to eleven with acts large and small,
as a way to rekindle that spirit that you reference,
that togetherness that was so spontaneous and natural and impactful
in the days and weeks after nine to eleven happened.
Speaker 1 (02:03):
This effort is personal for you, correct.
Speaker 2 (02:08):
It is, Manny. My brother Glenn Winnick died in a
line of duty and the terrorist attacks in New York City.
He was a partner at the Holland Knight law firm,
and their offices were located a few blocks from the
World Trade Center for twenty years. Glenn was a volunteer
firefighter and an EMT in our hometown on Long Island,
(02:32):
and so he helped evacuate the law offices of his
firm and then headed on foot into the South Tower
to save lives and he perished when the South Tower collapsed. So,
you know, Glenn was somebody who lived his life and
died in service to other people, and I wanted to
engage in an initiative that reflected the way he lived
(02:54):
his life.
Speaker 1 (02:55):
How do you balance that the grief so many years
later and still rem remembering and missing your brother, and
the pride you have to feel with what this day
of remembrance has become.
Speaker 2 (03:09):
It is bittersweet, Manny. You know, I have to tell
you we never forget Glenn. I'm so proud of him
every day and I think of him every day. But
the legacy that he has left is extraordinary and impactful.
Along with my co founder David Payne, we just kept
putting one foot in front of the other, hoping, just
(03:32):
hoping that this idea would resonate and take root with America,
and indeed it has, and so for that I'm extremely grateful.
It's I feel like you asked about it on a
personal level, Well, it's I feel like working on this
initiative is really the best thing that I could do
in Glenn's honor, encourage people to do good deeds for
(03:54):
other and to come together, at least on this on
this one day a year, and and so that's very
meaningful and gratifying for me.
Speaker 1 (04:03):
Next year will be the twenty fifth anniversary. Obviously, I
imagine that would be an enormous thing in the company,
in the country. And on nine to eleven, we obviously
have the ceremonies there at Ground zero, at the Pentagon
in Pennsylvan Shanksville and across the country. But do you
think the further away we get from the attacks, the
(04:25):
less the less Americans really feel of how we all
felt in those days and weeks afterwards. We've forgotten how
it impacted all of us.
Speaker 2 (04:37):
Well, we wonder about that all the time. Certainly in
the early years when we were starting this initiative, you know,
we looked at ourselves, those of us who were responsible
for getting this observance underway, wondered would it matter in
five years, ten years, fifteen years, would it matter in
twenty five years? But I have to tell you it does.
There have been about one hundred million people born born
(05:00):
in this country. Many since nine to eleven happened to
one hundred million people, And of course they have no
direct memories of the attacks, nor of the way the
nation came together that I have to tell you when
when we see about the response of young people to
engage in service of the Day of Service each September,
(05:23):
it's very inspiring and encouraging. They really want to know.
And I think that part of the magic here is
the combination of remembrance and service. You know, give give
people an opportunity to do something meaningful as a way
to remember, as a way to impact the world around them,
their communities or whatever it may be. And it's amazing
(05:46):
how it resonates with people. But we do those of
us who were here twenty four to twenty five years ago,
I think we have a responsibility to make sure that
future generations understand just what went on and what lessons
we can take out of that tragedy. And then the
way people came together.
Speaker 1 (06:03):
Is that the biggest challenge in sustaining the momentum for
nine to eleven day, the further away we get from
the actual.
Speaker 2 (06:11):
Day, I suppose, but you know, we have people from
all fifty states participating every year. It is by far
the largest day of service in the country. Tens of
millions of people actively engage in the observance by doing
good deeds and so that is very encouraging. Our organization
about ten years ago started staging signature service projects around
(06:35):
the country. This year, we'll be staging large scale meal
packs in twenty four cities throughout the United States. And
the response to that from volunteers and companies and municipalities
and faith based groups and sports teams to participate in
those large scale meal packs. I mean, just this coming
(06:57):
nine to eleven, more than nine million meals going to
be packed in one day to feed people who are
risk of hunger in this country. That's just one example
of how remembrance and service on nine to eleven are
positively impacting those in needs. So I think it's a
good sign.
Speaker 1 (07:16):
We've talked about how personal this is for you. Has
there been Has there been a personal moment in these
years with nine to eleven Day that really stands out
for you on a personal level?
Speaker 2 (07:29):
Oh? So many, I have to tell you. It's really something.
You know, My brother Glenn, my late brother Glenn, had
so many wonderful people in his life, family and friends
and colleagues, and so many reach out each nine to
eleven and continue to remember. And that's very meaningful too.
The work that I get to do on nine to
(07:50):
eleven Day, I have a front row seat to an
amazing outpouring of generosity and humanity and passion. Perhaps though
most personal, is seeing how my kids have come to
appreciate both how special their uncle was one of them.
(08:11):
My son Justin was only four, my daughter was yet
to be born when he died, and their understanding of
not only the way Glenn lived his life, but the
legacy that he has left behind. And to see how
the country rallies around this observance each year, to me,
that's very personally heartwarming because they are the next generation.
Speaker 1 (08:35):
A couple more minutes here with Jay Winnett, co founder
executive vice president of nine to eleven Day, what role
do you see as schools and local communities that maybe
are far away from ground zero the Pentagon Shanksville have
it in continuing to grow this anniversary, in this day
(08:55):
of service every year.
Speaker 2 (08:59):
It is gratifying to see that more and more schools
are built into the curriculums teaching about nine to eleven.
But I do think we have a long way to
go to ensure that it is taught universally and properly,
that it's not just another day on the calendar, and
we see examples every year of more and more schools.
(09:21):
And we have a robust education program with free downloadable
lesson plans on our website nine to eleven day dot
org that are used increasingly in classrooms all over the country.
There are college campuses that are doing service projects, in
part funded by a program that we do with AmeriCorps,
(09:43):
where college students everywhere, about eighty campuses this year alone
are going to be doing service projects either on campus
or in the communities where those colleges are based. So
I think there's the promising future in terms of education
and nine to eleven. Our friends at the Nine to
eleven Museum have a robust education program for young people.
(10:05):
There's a lot of efforts being made by a lot
of organizations to ensure that nine to eleven is not
forgotten and that the lessons coming out of nine to
eleven are learned generation after generation.
Speaker 1 (10:17):
Do you come across people who are skeptical maybe of
the connection between public service or performing a good deed
as having anything to do with remembering the terror attacks.
Speaker 2 (10:30):
We had very little pushback, I can tell you, as
soon as people realize that it is to reflect the
way the nation came together. You know, this was a
bipartisan effort then, and when you know, if you talk about,
let's say, the political environment that is often very divide
in this country, every kind of person with every kind
(10:52):
of political background or geographically, we were so spread out
religious differences, sexual orientation differences, economic differences. Nine to eleven
touched everybody in this country, no matter who you were,
no matter where you were, and of course, people from
more than ninety countries perish in the attacks. So we
were all hit in one way or another by this tragedy,
(11:15):
and it is a time to come together. We do
get virtually no real pushback on the connection between service
and nine to eleven, because it was service. It was
good deeds that helped bring us out of the tragedy
after nine to eleven. And as soon as people understand that,
they understand the sensibility of an observance like this, and
(11:35):
it's why it has grown into the nation's largest day
of service, Jay, how do.
Speaker 1 (11:39):
You navigate that, especially in today's increasingly divided country. Those days,
those weeks, We've talked about it several times in our
conversation already. It was really even for somebody cynical. The
last time we were all united as Americans. You mentioned
all of those things, politics, were and sexual none of
(12:01):
it mattered. We all came together as a country. And
how do you walk that fine line in this day
and age on this anniversary every.
Speaker 2 (12:09):
Year, you know, it's gotten to the point really where
you know that famous line, if you build it, they
will come. We are presented. We have presented this opportunity
to the nation, and the nation has responded by the millions.
You know, people really are looking for something productive and
meaningful to do as a way to mark the day.
(12:31):
And I think most people appreciate the opportunity to put
aside the divisiveness and realize that we are all Americans,
that everybody needs and helping hand once in a while.
Most people in this country have an opportunity to make
a difference with x large and small, and it really
(12:51):
does resonate with people. Of course, we all wish for
more of it, for the rhetoric to be toned down
and people more and more opportunities to make a difference
for others, but especially on this day, people get it.
People get it, and it's very heartwarming and impactful.
Speaker 1 (13:11):
Speaking of that, what do you hope the impact is
this year, what do you see as a single person's
day of service or good deed.
Speaker 2 (13:22):
Well, the impact is going to be tremendous.
Speaker 3 (13:24):
You know.
Speaker 2 (13:24):
As I say, tens of millions of people participate. And
it's not just in these you know, meal packs of
course that we stage. I mean we'll have more than
thirty thousand volunteers just at the meal packs that we're
staging as examples of the way that people can make
a difference on nine to eleven. But boy, you pick
a thousand people and you'll find a thousand good deeds.
So the impact is tremendous. I mean it's an army
(13:48):
of people, of tens of millions of people, either in
self directed ways or in organized activities with the municipalities
or their faith organizations or their employers. I mean, there
are more than seven hundred companies in this country that
are just sponsoring our MUNE packs alone, much less all
the other things that corporate America. I mean, it must
(14:11):
be the largest day of corporate volunteersm in the country too.
It's really really something. So, you know, and with the
twenty fifth anniversary coming up next year, I think there's
going to be an extraordinary outpouring of goodwill but also learning.
You know, where do we go from here?
Speaker 1 (14:31):
Nine eleven day dot org is the website if you
want to find out more information, if you want to donate,
nine one one day dot org. And I'm looking ahead
to next year. I can't imagine what that's going to
be like. Jay, I really appreciate the time, everything you've done.
Best of luck this year and in the years beyond.
Speaker 2 (14:53):
Thank you, it's a pleasure to speak with you.
Speaker 1 (14:55):
It's Jay Winnick, co founder and executive vice president of
nine eleven Day. Just a reminder if you have any
questions or comments, you can follow me on Instagram at
iod Manny is my handle at iod m a n Y.
September is blood cancer Awareness month. But exactly what does
(15:18):
that mean? I thought we'd talk about it as we
bring in Lee Clark, Senior Director of Patient Programs, a
Board certified patient advocate with the Aplastic Anemia and MDS
International Foundation. Lee, I appreciate the time, Thanks for joining us.
Speaker 3 (15:33):
Oh, thank you so much, Manny. We appreciated the invitation
and I'm delighted to be able to talk about blood
cancer awareness.
Speaker 1 (15:42):
Well, let's start off with, I guess the simplest question,
why September? Why is this month designated blood Cancer Awareness Month?
Speaker 3 (15:51):
Store great question, Thank you so much. The Leukemia Foundation
actually began Blood Cancer Awareness Month in September of twenty
ten as a month to be able to recognize blood
cancers which most people were not aware of and still
(16:15):
are not today. So it was actually started by the
Leukemia Foundation in September of twenty ten.
Speaker 1 (16:22):
And leukemia is probably, I'm guessing, the best known blood cancer,
but there are many others, are there not?
Speaker 3 (16:31):
Absolutely so, when most people think of, you know, blood cancer,
they think of leukemia, lymphomas, myolomas, but there's so many
other blood cancers that are not known, and there's actually
over one hundred different blood cancers. And the blood cancer
(16:53):
that our organization supports is milo dysplastic syndromes, where sometimes
people will refer to as MDS, and there's only ten
to fifteen thousand that are new cases that are diagnosed
each year in the US, and it is a rare
(17:16):
blood cancer.
Speaker 1 (17:18):
What exactly is a plastic anemia or I'll refer to
as an MDS because I won't be able to pronounce
the full name what exactly is that?
Speaker 3 (17:28):
Yeah, so a plastic anemia is actually not a blood cancer.
So MDS or milodysplastic syndromes is the blood cancer that
our organization support. So it's actually where your bow marrow
is not producing healthy blood cells, which then causes anemia
(17:53):
and other symptoms for patients. And there are treatments available,
but the only known cure at this time is a
bow marrow transplants.
Speaker 1 (18:05):
What are some of the symptoms of this? How does
someone end up going to a doctor and get diagnosed
with an MDS?
Speaker 3 (18:13):
That excellent question. So most patients don't even really know
they have MDS. It can be found through a blood test.
You go in for a physical and have a CBC.
A lot of times patients will say they were feeling
fatigued or they may notice they were having bruises on
(18:37):
their legs unexplained. So usually the diagnosis starts with some
type of symptom of the disease, which then leads to
tests being done, a referral to a hematologist or an oncologist,
and then further testing is done. But ultimately the disease
(18:58):
is diagnosed through a bone marrow biopsy.
Speaker 1 (19:02):
And the you mentioned that there's there's no real cure,
but what kind of treatments does someone with MDS star?
Just a bone marrow transplant.
Speaker 3 (19:13):
A bone marrow transplant as of today, is the only
known potential cure, but there are other treatments that are
available for patients that help with the symptom management of
the disease.
Speaker 1 (19:28):
How does your group empower patient? I guess caregivers are
a key part of the whole process as well.
Speaker 3 (19:35):
Absolutely so. Once someone is diagnosed, everyone that knows and
loves them is diagnosed as well. So through our organization,
we are looking to empower patients with information about their diagnosis,
(19:55):
what they're what the treatment options are that are available,
providing them with resources where they can get connected with
others who have MDS. With the disease being so rare,
it's really hard for patients to be able to connect
with another patient. And then we you know, through our
(20:19):
educational programming. Each year we host patient and family conferences.
We have our webinars, which are interviews with experts about
different topics that would be important for patients and their
loved ones their support networks to know. We also host
podcasts such as the one that We're on today. But
(20:41):
the other piece that's really important that we do is
we also invest in research, making sure that the latest
is being done and looking for patients to understand that
there are things that are being done to help advance
treatments and a cure that may be available for everyone.
Speaker 1 (21:06):
Do these types of I guess they're known as marrow disorders.
Do they primarily affect a certain demographic?
Speaker 3 (21:15):
So it depends on For mds, the median age of
diagnosis is in your early seventies. It's not discriminative of
whether you're a male or female. However, with all of
that said, there are children who are diagnosed young adults,
(21:37):
but primarily it has been known as a disease of
older individuals, but that doesn't mean that other age groups
are not diagnosed.
Speaker 1 (21:48):
Is there a cause? Do we know what causes these
types of blood cancers.
Speaker 3 (21:53):
Sture? So for MDes, there are you know a few
things that experts have been able to determine. One of
them is environmental exposures. It could be a known cause.
Speaker 1 (22:08):
A couple more minutes here with Lee Clark, Senior Director
of Patient Programs, a Board certified patient advocate, with the
aplastic anemia and MDS International Foundation. Talk to me about
how you became part of this group and a patient
advocate for something like blood cancers and MDS.
Speaker 3 (22:29):
Sure, so, great question, and I have been very proud
to be a staff member here at the Foundation for
the past eighteen years. I actually had worked in the
field previously with individuals with developmental disabilities as an advocate,
(22:50):
So that's how I came upon the organization through a
former colleague and and you know, learned about the foundation
all that they do to help support patients and their networks.
(23:11):
And I've been very proud to work here for an
organization that is all about patients first, supporting patients, supporting
their network, working side by side with healthcare providers, and
making sure patients have the very best in education about
(23:32):
their diagnosis, and providing supports.
Speaker 1 (23:36):
You mentioned a couple of times that providing that support,
empowering patients for MDS, for example, because it's so rare,
is one of the challenges. How I guess popular is
the wrong word, But how prominent are these blood cancers
when we think of it in the scope of all
of all of the other cancers.
Speaker 3 (23:57):
Sure, So, for MDS there approximately ten to fifteen thousand
individuals diagnosed each year in the US, so MDS is
known as a rare disease and it can be very
difficult for patients finding supports. It can be very difficult
(24:19):
finding someone who has MDS for you to be able
to connect with and talk and share experiences. Some of
the other challenges with MDS is finding a physician who
is an expert in MDS. It's very important for patients
(24:42):
to find someone that understands MDS. It can be very
challenging to manage and to treat. And one of the
things our organization is able to do is help connect
patients with these expert physicians to make sure that they're
getting second opinions and then there and that they're getting
(25:04):
the very best care. One of the things that we
hear a lot is from patients is MDS isn't an
invisible disease. So patients look fine, you may not really
know that there is something that is going on with them,
and that can be very challenging for for patients. But
(25:29):
you know, through our organizations, through our educational programming UH,
through our virtual support groups UH, through our we have
something that's called our peer support network, which is where
we can connect patients one on one with another patient
to be able to talk about what they're going through
(25:50):
and be able to share experiences. We're able to help
patients find answers to their questions, support for what they're
going going through, and hope for a future.
Speaker 1 (26:04):
Do you find that most primary care physicians lack information
about blood cancers and mds and things like that.
Speaker 3 (26:17):
Yes, it's not their area of expertise. Sometimes I hear
from patients quite often they went in for a routine
physical with their primary care physician and when they got
blood work back, the primary care physician noticed something was
(26:38):
off with the blood work and then ended up referring
them on to a hematologist oncologist where they did more testing.
So sometimes the diagnosis starts out of physical Sometimes folks
don't even really realize there's something going on inside of
(27:00):
them because they may not be exhibiting symptoms that you
would think of when you hear somebody has a blood cancer.
So a lot of times, right it starts with the
simple I went in for a physical how to CBC.
Or they may go to the doctor because they've noticed
they have extra bruising that may happen that would lead
(27:25):
them to go, but usually it's there's a diagnosis would
be sometimes through the primary care physician that then prompts
the going to see a specialist.
Speaker 1 (27:37):
We mentioned September is blood cancer Awareness month. How do
you hope to make the general public aware of blood
cancers and what impact do you hope to have this month?
What do you want the public to know.
Speaker 3 (27:54):
We'd like the public to know that you know there
are many blood cancers that our patients are being diagnosed.
Our hope is is that with patients hearing about for
us MDS, it would spark them to think about if
(28:16):
they're suffering from anemia or they're having symptoms, to seek
a second opinion because MDS would be something that they
may want to inquire about. Our goal is also to
help our community, the MDS community, make awareness about their diagnosis,
(28:41):
give them something to empower them, letting people know what
is going on with them, and hopefully through education, we're
able to help others who may be in the process
of being diagnosed or received a new diagnosis be able
to find us.
Speaker 1 (29:01):
And sometimes it's that peer support and the community that
can be the difference between a successful treatment and an
unsuccessful treatment. Lee really appreciate the time. Really appreciate the time.
Best of luck.
Speaker 3 (29:13):
Thank you so much for having me have a great day.
Speaker 1 (29:16):
That's Lee Clark, Senior director of Patient Programs at the
Aplastic Anemia MDS International Foundation. The website is a A
m DS dot org a A m d S dot
o RG. As always, I'd love a follow on Instagram
and I follow back at io D Manny is my
(29:39):
handle at io D m A n n Y. And
that'll do it for another edition of Iheartradios Communities. I'm
Manny Muno's until next time.
Host
Manny Munoz
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