June 23, 2024 • 25 mins
Kristin Lamorte Ross joins us to discuss Always be Kind Foundation and how they help the community of Chicago. Albert T. Roy joins the show following Lupus Awareness Month to discuss the disease, including progress in diagnosing and treating Lupus, along with research currently underway to find a cure.
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Episode Transcript
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(00:00):
Hello, and welcome to the weeklyshow here at iHeartRadio on ninety three nine
Light FM, one All three five, Kiss FM, and Rock ninety five
to five. I'm Paulina, andevery week we're here to discuss a variety
of topics that matter to Chicago Land, from health, education, finances,
and so much more. Today onthe show, we have Albert Troy,
President and CEO of the Loopus ResearchAlliance, joining us to talk about Loopus
(00:23):
Awareness Month, discussing the disease,including progress in diagnosing and treating lupus,
along with research currently underway to finda cure. And also we have another
episode this week for you with Whitney, Reynolds and Brady for Whitney's Women.
Let's kick off the show. Maywas Lupus Awareness Month and to discuss the
(00:44):
disease and what's being done to combatit. I'm joined by the President and
CEO of the Lupus Research Alliance,Albert t Roy. You can learn more
at Lupasresearch dot org. Albert,thanks so much for taking a few minutes
too. Come on the show andlet's start with an overview of how the
Lupus Research Alliance first came about andthe work that you do. Yeah,
Ryan, thank you for having me. You know, the LRA really started
(01:11):
back as an organization called the Alliancefor Lupus Research in nineteen ninety nine.
It was founded by a gentleman namedAmbassador Robert wood Johnson, the fourth or
Woody Johnson, who started the organizationbecause of his one of his daughters was
suffering from lupus. And it's morphedover the years. It's combined with other
organizations to culminating twenty seventeen to becomethe Loopus Research Alliance. And we're a
(01:38):
very simple organization to understand. Youknow, our vision is to our vision
is frankly, to free the worldof loopus. And we do that through
achieving our mission, and our missionis putting people with lupas at the center
of all we do. We drivethe discovery and the development of the next
generation diagnostics for lupus as well ascurative treatments. Can We do this through
(02:00):
forging strategic collaborations with industry and researchersin funding what we think is the best
research in the world really from thebench to the bedside. And you know,
because of this, because of ourfocus, because we're very focused on
just research. We are the world'slargest private funder of loopus research non governmental
(02:23):
funder of lupus research in the world, so you know, we're doing a
lot in space and we're excited aboutthe future. I think most everyone has
heard of lupus, but many listeningmight not really understand what exactly it is.
Can you explain that for us?Yeah? Sure. Lupus is a
(02:45):
chronic autoimmune disease and affects millions aroundthe world. Nine out of ten people
with lupus are unfortunately women. It'smost often diagnosed in the child bearing years
for women, and that's between theages of fifteen and forty four. Women
of color are especially at more risk, three times more likely to get loopus,
(03:10):
and we don't know why, rightwomen not attend people that get are
women. We don't know why womenof color are disportionately affected. That's what
we're seeking to solve. The easiestway to explain it is essentially people with
loopus. Everyone has an immune system, and your immune system is really used
(03:34):
to protect you against infection, butinstead with loopus, your body essentially doesn't
leave your body alone. And whatI mean by that is that your immune
system unfortunately creates antibodies that are mistakenlyrecognized by your immune system in its normal
(03:55):
cells as foreign and essentially a taxyour means to some tax your own self,
your healthy tissue. And this manifestsin the organs and manifests in the
skin. The most common symptoms thatwe see with people who develop loopus our
skin rashes, particularly in the face, the butterfly rash, which extends below
(04:19):
the eyes and over the nose,fevers, severe fatigue, joint inflammation,
skin inflammation, and sometimes the skincan be very disfiguring. And so that's
lupus in a nutshell is essentially yourbody doesn't leave your body alone, and
we don't know why. But whatworking real hard to find out does this
(04:42):
have the potential to be a deadlydisease? It can because of its how
chronic it is, because it's thatthere is no cure. I think what
makes lupus potentially fatal is that thetreatments that most people receive for loopus are
(05:02):
treatments that were developed for other diseases, or people receive high doses of steroid
called premosome and cancer therapeutic agents arenot intended to be given in a chronic
setting, but they are in loopussometimes for the most severe cases premosomee,
(05:25):
which is incredible for treating inflammation inacute setting. It's not intended to be
given over twenty five to thirty toforty years, and so what that does
is people who are receiving these treatmentsto sort of support their care. There's
toxicity associated with long term use ofthese drugs, and that's why we are
(05:46):
so focused on really understanding the biologyof the disease, understanding the pathways of
what gets triggered in an individual itleads to their loopus, and really developing
targeted therapies that are not as toxicbut really tailored to support the care of
(06:08):
these individuals and not repurposing things thatwere never intended to be given over ten,
twenty thirty forty years. And sobecause of the toxicity of some of
the drugs, people's quality of lifesuffer, and that's what ultimately sometimes can
cause this disease to be fatal.However, I will say that there is
(06:28):
one component of loopus that has afairly high mortality rate, and that is
when lupus involves the kidneys, andthat's called loupus nephritis, and so we
have to pay attention very closely tothese patients because over time, the damage
that accrues if the treatments aren't goodis that people sometimes go into kidney failure
(06:48):
in the transplant. When you haveto go to a transplant, then there's
a whole set of other risks thatcome into the pictures. So you know,
one of the things that we've doneis is there are two drugs approved
for lupus, and those two drugsreally were born out of the research that
the LRA and its legacy organization supported. We're proud of that. And there's
(07:12):
also a drug that was recently approveda couple of years ago for lupus to
fritus that the LRA had invested somefoundational research and that also led to that.
So while there's only three therapies availableto people broadly for lupus, the
LRA's had a hand in it,and we're excited about the future of some
new therapies that are also being testedclinically. May was Lupas' Awareness Month.
(07:32):
Im Ryan Gorman and joining me totalk more about all of this as the
President and CEO of the Lupus ResearchAlliance Albert t Roy. You can learn
more about the work they do andsupport that work at Lupusresearch dot org.
When it comes to diagnosing lupus,what is that process like and has that
changed over the years as we've learnedmore and more about this disease? You
(07:56):
know, I think the so toanswer your question directly, diagnosis is very
very challenging. There are people withlupus who don't get diagnosed for sometimes six
to ten years into their journey.And the reason that is is because it's
lupus. While it's lupus is categorizedas a disease, I can't think of
(08:16):
another disease where it's more sort ofheterogeneous, meaning that everyone is an end
of one right, It's very individualized. And because of that, and because
of how it waxes and wanes,and because of how it sort of comes
out of nowhere, it makes itvery very challenging to diagnosed. The instruments
(08:39):
we use, are we the cliniciansused to diagnose someone with lupus are very
complicated, very convoluted. And I'mtalking about rheumatologists that are have learned over
years, have been trained and havea focus on lupus To this day find
it very very challenging to deploy someof these clinical assessments, and so we
(09:01):
got to have better diagnostics. Moreimportantly, we have to have better bio
markers, meaning that we have tounderstand someone with loopis, what are the
biomarkers that are driving their disease andcan those bio markers allow us to predict
how they may respond to certain treatments. And so there's a lot of research
and understanding biomarkers and cancer. Cancerhas been so well sort of treated some
(09:28):
cancers, not all because of understandingthat the antigen or the biomarker and being
able to drug it right. Tounderstand and see that and see that and
predict response. That's where we needto get with loopus. It really has
to become an individualized disease, apersonalized medicine approach and be able to do
that. Not only do you haveto diagnose them earlier to prevent damage,
(09:52):
you also have to understand what's drivingthe disease, and so you have to
get to the molecular genetics of thedisease so you can stratify patients based on
prognosis and then match best patient forbest drug in terms of the numbers of
people diagnosed with lupus, has thatincreased, it all decreased, remained steady.
What can you tell us about that? Yeah, I think the prevalence
of lupus is probably fairly static.I think we're getting better at diagnosing it
(10:18):
early because the awareness of loopus hasbeen increased. And that's why Lupas Awareness
Month and May is so important.One not only highlights the disease, but
it also increases awareness. And soI think because of that, because of
the attention it's getting I ought toget, there are things that are helping
us diagnose it better. But Ias far as you know, the prevalence
(10:43):
of the disease, to my knowledge, and again I don't have it in
front of me to quote, butfrom my knowledge, I think it's fairly
static. You know, it's millionsof people worldwide have loopus. You know,
in the US, depending on whereyou read, it ranges from one
hundred thous hundreds of thousands of patientsto a million. You know, I
think that's to me to be abit debated. Bottom line is there's probably
(11:05):
a lot of people still with loopisthat don't know they have it, and
that's sort of confound some of thenumbers, but overall, I'd say it's
fairly static. Is your organization involvedin studies on Loopus beyond the research that
we've talked about, clinical trials thingslike that. Yeah. So we when
we started our organization, because wedidn't know why people get loopis, there
(11:31):
was a great emphasis on supporting basicscience, basic biology of science. So
a lot of discover research within anacademic setting is something that the Loopus Research
Alliance had invested a lot in andwe still do. But over the period
of time, as we've learned aboutthe specific pathways that drive the disease,
for the most part, we've sortof augmented how we support science in the
(12:00):
clinical space and the translational space closercloser to the human being. And so
we established an affiliate organization in twentyeighteen called Loopus Therapeutics. They're a wholly
owned affiliate of the LRA, andtheir charge was to essentially take the learnings
that the organ we supported, thebasic science, the translational learnings, and
(12:22):
to work with pharmaceutical companies and developingdrugs or potential new therapies within an infrastructure
of clinical trial sites that we supportthroughout North America, and that apparatus or
that infrastructure is called our Loopus ClinicalInvestigators Network are LOOSEN and this is a
(12:43):
group of academic medical centers, fiftyfive of them within North America, primarily
in the US. What we dohave a number of centers in Canada and
they partner with our affiliate to sortof conduct clinical research. And here to
four Lupas Therapeutics is involved in abouttwenty five percent of the act of lupus
(13:05):
clinical trials that are taking place withindustry, with the biopharmaceutical industry, and
that's growing and so we're really excitedabout that, and I think it really
shows the breadth of the type ofresearch we do from the basic science,
the cellular science, all the waythrough to the clinic where it's being evaluated
(13:26):
in the context of the clinical trial. And that's really started happening since twenty
eighteen and will continue to For thosewho either have lupus or for family members
friends of those who've been diagnosed withlupus, what are some of the resources
that you have available online that theycan check out to learn more about all
(13:48):
of this. Yeah, so,you know, one of the cool things
that we we did for Lupus' AwarenessMonth is we sort of developed a toolkit
that really helps individuals who were justdiagnosed. And as you can imagine with
any diagnosis of any disease, it'sit's it's extremely overwhelming, as you can
(14:11):
imagine it. And because lupas iswidely misdiagnosed and misunderstood, raising this awareness
is raising awareness is critical. Sowe developed a social media kit that it's
on our website at this research dotorg and it's really put together, I
think very well. It's got readyto use tools for for spreading the word
on on on what lupus is,where what you how you can get connected
(14:35):
to a healthcare provider within our network. It's on all of our social media
platforms uh and we think it's agreat resource and in many ways will make
a big difference to those that aresearching for answers and it's and there are
plenty of other opportunities on our websiteto learn more about how you can get
involved beyond just sort of where doI go to get seen? Because I
(15:00):
think one of the biggest things ryanthat we see in loopis and sort of
getting new therapies is there's really alack of participation that's representative of the patient
population in clinical trials. And theonly way that we can get people off
of prendizone long term or some ofthese chemotherapeutic agents that are used Methodred's SAKESOX
(15:24):
and cyclophosphamind et cetera, is tohave better drugs that are tailored. And
the only way that happens is ifyou participate in research. And I think
one of the big things that we'retrying to push as an organization is that
while we want to support people intheir journey make sure they're getting the right
care, we also want to understandwhat the benefits and the advantages are of
participating in research. There's plenty ofways to do that with our organization through
(15:50):
clinical trials, but also in noninterventional ways. And we hope that when
you come to our website, peoplecome to our website to learn about those
ways to get engaged with us aswell get the resources they need to make
some informed decisions about their own care. And again, that website is Lupusresearch
dot org. That's Lupusresearch dot org. May was Lupus Awareness Month, and
(16:12):
with us we have president and CEOof the Lupus Research Alliance, Albert t
Roy. Albert really appreciate it takingtime to come on the show, and
thank you so much for the greatwork you're doing on this disease and all
the research tied to it. Andit's been a pleasure. And you know,
it takes a village, and Ihope that people that hear this and
(16:33):
listen to it can get involved withus and looking forward to the next time
we can connect. We make itwork no matter how, even if we
can't be together in person, we'realways together in spirit, it seems,
and today we're on the phone together. It is the one and only the
incredible ray of sunshine known as WhitneyReynolds from The Whitney Reynolds Show. Hello.
Hello, and you are right.We are always together in spirit,
(16:55):
especially when it comes to elevating womenin our city who are making their mark.
I am so excited to bring youthis month's Whitneys Women with Kristen.
Kristen, welcome to the show.Ah, thanks so much for having me.
You know, Kristin, you area repeat Whitneys Woman, meaning that
you are doing good continually for ourcity, which is incredible. So tell
(17:18):
us a little bit about your nonprofit. So our nonprofit is called Always be
Kind. We developed Always be Kindwhen my husband Larry was very, very
sick with cancer and we were justsuper overwhelmed with all of the kindness shown
to us by others. And wereally do believe that that kindness in some
(17:40):
way helped him to recover. Sowe wanted to repay that kindness somehow,
and this is what we came upwith. You know, when people are
faced with adversity and health issues,sometimes it's easy to want to curl up
and say, Okay, maybe Iam just going to wave my white flag
for a second. But this isreally when you guys doubled down. One
(18:02):
thing I love about your story isthat you didn't wait very long to start
this. No, no, wedidn't. We really probably when he was
the sickest is when when we decided, yeah, we're going to do this.
And so far we've you know,we've raised over ten thousand dollars.
(18:22):
We donated to two main beneficiaries alreadybeing the Northwestern Medicines Oncology their Patient Family
Assistant Son and the University of Chicago'sAdult Center Emergency funds. So yeah,
we've helped over one hundred people sofar with parking, meals travel. That's
really where our funds go, youknow, to help and with the with
(18:45):
the small expenses that add up becauseof a cancer diagnosis. Absolutely, and
you know, Brady the name I'mgonna bring you into this Brady, because
you are one of the mates people. I know you have a heart for
people, can you? They gotthe name always be kind. That should
have been like the first thing ifyou're to start a nonprofit, it should
have the word kind and you shouldalways do it. So congratulations on the
(19:07):
best name ever and having it availablefor you fits perfectly. Thanks so much.
I know we were so excited aboutit. We couldn't believe it ourselves,
to be honest with you. Soyeah, we're really happy about it.
Going to your website was like andthere it is always be Kind.
But it is those small acts ofkindness that really do add up. And
I love it, you say,you know, we've been doing paper parking
(19:30):
or doing little things invite our listenersinto the things that you do whenever someone
is diagnosed for cancer. So Imean what we do by donating to these
two different funds that I that Imentioned, they will actually disburse the funds
to people. You know, justfor instance, if you if you are
(19:52):
sick and can't go to work,you could be struggling paying your bills,
so they will help you do that. They will discourse the fund to do
that. So it just it's thelittle things that we don't really think about
that really do add up. Thesesmall expenses add up and then before you
know it, you're really in ahole. So that's where we were,
(20:14):
like, my gosh, we youknow, we did feel fortunate that we
could do these things, but lookingaround us, a lot of people couldn't.
You know. In one thing,like I mentioned before, even if
you can't help monetarily, it wasI mean my head, friends and clients
that the overwhelming response of kindness,even just by kind words or recipes that
(20:38):
people would give us, just youcan always be kind. It doesn't have
to just be a monetary kindness isamazing and it's so true. Okay,
so we talked about how fast youguys acted on this, and you've founded
the nonprofit, but now you mighthave your first walk and it's coming up.
(20:59):
Tell our listeners how they can getinvolved, how they can join forces.
Oh yeah, we are so excited. So we have our first annual
five k walk run coming up Junetwenty ninth. The event starts at the
dock at Montrose Beach, which ifyou don't know, is located at two
hundred West Montrose Harbor Drive. Thewalk will start at nine am, but
(21:21):
registration will begin it at eight.Everybody's welcome, rain or shine, and
you can sign up by going toalways be Kind dot org. And like
I said, if you can't makethe event or you'd still want to help,
you can always make a donation bygoing to always be Kind dot org.
And then if you can't make amonetary donation, just be kind to
(21:41):
each other. And that's the bigyou know, that's the biggest thing.
Just be kind. You never know. It costs nothing to be kind,
but it can be priceless in itsimpact on somebody's life, you know,
and we feel that it was inours, especially when someone's in throes of
getting that cancer diagnosis. You neverknow what other people are going through,
(22:04):
and so the kindness is just veryvery crucial to what makes things, you
know, continue, And so Iyou know, Christen, I've known you
a long time and I've known forthe answer diagnosis tell us how Larry is
doing today. Larry is doing great. He is healthy, he's coming up
on two years. He'll have anotherscan. I believe it's next week,
(22:29):
and everything looks good, and youknow, we just we thank God and
we're just we're so happy. Buthe's very strong, he's very healthy.
It was terrifying. We didn't,you know, at the time. I
don't think we realized how afraid wewere. But you know, looking looking
back on it, you know,we're we're so lucky that that we had
(22:52):
the kindness that was shared to usby everybody else. It was really remarkable.
But yeah, he's he's very healthynow, he's really really excited.
He'll be at the wall. He'sbehind He's going to be at the walk.
Oh. Absolutely, yep, we'llbe we'll be there. We have
friends, family, everybody's coming.So yeah, okay, great, and
we want our listeners to as well. Please give us that website again where
(23:15):
they can get involved. They canget involved at always be kind dot org.
Awesome, Kristin, thank you somuch for coming on. Thank you,
thanks for having me guys day.Yeah, and if they can't show
up that day, they can alsoshare kindness with the world. You're spot
on with that concept. Thank youso much, Christina, Thank you.
(23:37):
I need to know is their merchavailable. I need to always be kind
T shirt to be a walking billboardfor this cause because that oh yeah,
we definitely yeah when you when youshow up for registration, there's T shirts
there that come with your registration.They'll be great. We'll definitely get you
guys one so's it'll be perfect.Love it, Whitney. That's like your
mantra. It really is like whenthey told me that this as their nonprofit
(24:00):
and it's rooted in kindness and youknow, Larry had, you know,
a tough cancer diagnosis. But everybodythat we meet is going through something,
right, It's kind of inevitable withour world. And if we can be
their light that day or in thatmoment, that is what's up. So
I'm so excited that they are havingtheir first annual walk because I know the
(24:22):
type of impact they are having onour community. Yeah, and speaking of
light and shining, it's you.That's what you do on your show.
I know You've got a lot ofbig things coming up. We do.
We are in the midst of planningfor the fall, which I just want
to enjoy the summer. But becausewe're in summer, that means our current
season is still running. We gotour numbers back and it is really incredible
(24:45):
how many people we are reaching withour topics of hope. And you know,
the Whitney Reynold Show is founded onbeing that safe space for stories,
and the stories that came out thisseason are ones that remind you that even
in tough chapters, you can getthrough. So I highly encourage everybody to
watch on World Channel, which isone of your PBS stations. We are
on Saturdays and Monday. It's likeI said, our current season is going
(25:08):
and we're planning for the fall,and it's never too early to talk to
holidays. Believe it or not.We are scouting for Whitney's wish List,
So any of our listeners have anyamazing products for businesses, let us know
because we are scouting that. Nowyou can go to Whitney Reynolds dot com
for more info. Thank you somuch for listening, and thank you for
being a part of the weekly showtoday and every single week on iHeartRadio.
(25:32):
We really appreciate you always being apart of this program. And of course
you can catch this episode and allthe previous episodes up on our free iHeart
app right now. Just search forthe Weekly Show and if you know somebody
who would make a difference in ourcommunity and who would be a great guest
to have, please feel free toemail me at Paulina at iHeartMedia dot com
and I'm going to try my bestto get them on the Weekly Show as
(25:52):
well. Thank you, have agreat weekend, Stay safe, Chicago,
Hello, and welcome to the weeklyshow here at iHeartRadio on ninety three nine
Light FM, one All three five, Kiss FM, and Rock ninety five
to five. I'm Paulina, andevery week we're here to discuss a variety
of topics that matter to Chicago Land, from health, education, finances,
and so much more. Today onthe show, we have Albert Troy,
President and CEO of the Loopus ResearchAlliance, joining us to talk about Loopus
(00:23):
Awareness Month, discussing the disease,including progress in diagnosing and treating lupus,
along with research currently underway to finda cure. And also we have another
episode this week for you with Whitney, Reynolds and Brady for Whitney's Women.
Let's kick off the show. Maywas Lupus Awareness Month and to discuss the
(00:44):
disease and what's being done to combatit. I'm joined by the President and
CEO of the Lupus Research Alliance,Albert t Roy. You can learn more
at Lupasresearch dot org. Albert,thanks so much for taking a few minutes
too. Come on the show andlet's start with an overview of how the
Lupus Research Alliance first came about andthe work that you do. Yeah,
Ryan, thank you for having me. You know, the LRA really started
(01:11):
back as an organization called the Alliancefor Lupus Research in nineteen ninety nine.
It was founded by a gentleman namedAmbassador Robert wood Johnson, the fourth or
Woody Johnson, who started the organizationbecause of his one of his daughters was
suffering from lupus. And it's morphedover the years. It's combined with other
organizations to culminating twenty seventeen to becomethe Loopus Research Alliance. And we're a
(01:38):
very simple organization to understand. Youknow, our vision is to our vision
is frankly, to free the worldof loopus. And we do that through
achieving our mission, and our missionis putting people with lupas at the center
of all we do. We drivethe discovery and the development of the next
generation diagnostics for lupus as well ascurative treatments. Can We do this through
(02:00):
forging strategic collaborations with industry and researchersin funding what we think is the best
research in the world really from thebench to the bedside. And you know,
because of this, because of ourfocus, because we're very focused on
just research. We are the world'slargest private funder of loopus research non governmental
(02:23):
funder of lupus research in the world, so you know, we're doing a
lot in space and we're excited aboutthe future. I think most everyone has
heard of lupus, but many listeningmight not really understand what exactly it is.
Can you explain that for us?Yeah? Sure. Lupus is a
(02:45):
chronic autoimmune disease and affects millions aroundthe world. Nine out of ten people
with lupus are unfortunately women. It'smost often diagnosed in the child bearing years
for women, and that's between theages of fifteen and forty four. Women
of color are especially at more risk, three times more likely to get loopus,
(03:10):
and we don't know why, rightwomen not attend people that get are
women. We don't know why womenof color are disportionately affected. That's what
we're seeking to solve. The easiestway to explain it is essentially people with
loopus. Everyone has an immune system, and your immune system is really used
(03:34):
to protect you against infection, butinstead with loopus, your body essentially doesn't
leave your body alone. And whatI mean by that is that your immune
system unfortunately creates antibodies that are mistakenlyrecognized by your immune system in its normal
(03:55):
cells as foreign and essentially a taxyour means to some tax your own self,
your healthy tissue. And this manifestsin the organs and manifests in the
skin. The most common symptoms thatwe see with people who develop loopus our
skin rashes, particularly in the face, the butterfly rash, which extends below
(04:19):
the eyes and over the nose,fevers, severe fatigue, joint inflammation,
skin inflammation, and sometimes the skincan be very disfiguring. And so that's
lupus in a nutshell is essentially yourbody doesn't leave your body alone, and
we don't know why. But whatworking real hard to find out does this
(04:42):
have the potential to be a deadlydisease? It can because of its how
chronic it is, because it's thatthere is no cure. I think what
makes lupus potentially fatal is that thetreatments that most people receive for loopus are
(05:02):
treatments that were developed for other diseases, or people receive high doses of steroid
called premosome and cancer therapeutic agents arenot intended to be given in a chronic
setting, but they are in loopussometimes for the most severe cases premosomee,
(05:25):
which is incredible for treating inflammation inacute setting. It's not intended to be
given over twenty five to thirty toforty years, and so what that does
is people who are receiving these treatmentsto sort of support their care. There's
toxicity associated with long term use ofthese drugs, and that's why we are
(05:46):
so focused on really understanding the biologyof the disease, understanding the pathways of
what gets triggered in an individual itleads to their loopus, and really developing
targeted therapies that are not as toxicbut really tailored to support the care of
(06:08):
these individuals and not repurposing things thatwere never intended to be given over ten,
twenty thirty forty years. And sobecause of the toxicity of some of
the drugs, people's quality of lifesuffer, and that's what ultimately sometimes can
cause this disease to be fatal.However, I will say that there is
(06:28):
one component of loopus that has afairly high mortality rate, and that is
when lupus involves the kidneys, andthat's called loupus nephritis, and so we
have to pay attention very closely tothese patients because over time, the damage
that accrues if the treatments aren't goodis that people sometimes go into kidney failure
(06:48):
in the transplant. When you haveto go to a transplant, then there's
a whole set of other risks thatcome into the pictures. So you know,
one of the things that we've doneis is there are two drugs approved
for lupus, and those two drugsreally were born out of the research that
the LRA and its legacy organization supported. We're proud of that. And there's
(07:12):
also a drug that was recently approveda couple of years ago for lupus to
fritus that the LRA had invested somefoundational research and that also led to that.
So while there's only three therapies availableto people broadly for lupus, the
LRA's had a hand in it,and we're excited about the future of some
new therapies that are also being testedclinically. May was Lupas' Awareness Month.
(07:32):
Im Ryan Gorman and joining me totalk more about all of this as the
President and CEO of the Lupus ResearchAlliance Albert t Roy. You can learn
more about the work they do andsupport that work at Lupusresearch dot org.
When it comes to diagnosing lupus,what is that process like and has that
changed over the years as we've learnedmore and more about this disease? You
(07:56):
know, I think the so toanswer your question directly, diagnosis is very
very challenging. There are people withlupus who don't get diagnosed for sometimes six
to ten years into their journey.And the reason that is is because it's
lupus. While it's lupus is categorizedas a disease, I can't think of
(08:16):
another disease where it's more sort ofheterogeneous, meaning that everyone is an end
of one right, It's very individualized. And because of that, and because
of how it waxes and wanes,and because of how it sort of comes
out of nowhere, it makes itvery very challenging to diagnosed. The instruments
(08:39):
we use, are we the cliniciansused to diagnose someone with lupus are very
complicated, very convoluted. And I'mtalking about rheumatologists that are have learned over
years, have been trained and havea focus on lupus To this day find
it very very challenging to deploy someof these clinical assessments, and so we
(09:01):
got to have better diagnostics. Moreimportantly, we have to have better bio
markers, meaning that we have tounderstand someone with loopis, what are the
biomarkers that are driving their disease andcan those bio markers allow us to predict
how they may respond to certain treatments. And so there's a lot of research
and understanding biomarkers and cancer. Cancerhas been so well sort of treated some
(09:28):
cancers, not all because of understandingthat the antigen or the biomarker and being
able to drug it right. Tounderstand and see that and see that and
predict response. That's where we needto get with loopus. It really has
to become an individualized disease, apersonalized medicine approach and be able to do
that. Not only do you haveto diagnose them earlier to prevent damage,
(09:52):
you also have to understand what's drivingthe disease, and so you have to
get to the molecular genetics of thedisease so you can stratify patients based on
prognosis and then match best patient forbest drug in terms of the numbers of
people diagnosed with lupus, has thatincreased, it all decreased, remained steady.
What can you tell us about that? Yeah, I think the prevalence
of lupus is probably fairly static.I think we're getting better at diagnosing it
(10:18):
early because the awareness of loopus hasbeen increased. And that's why Lupas Awareness
Month and May is so important.One not only highlights the disease, but
it also increases awareness. And soI think because of that, because of
the attention it's getting I ought toget, there are things that are helping
us diagnose it better. But Ias far as you know, the prevalence
(10:43):
of the disease, to my knowledge, and again I don't have it in
front of me to quote, butfrom my knowledge, I think it's fairly
static. You know, it's millionsof people worldwide have loopus. You know,
in the US, depending on whereyou read, it ranges from one
hundred thous hundreds of thousands of patientsto a million. You know, I
think that's to me to be abit debated. Bottom line is there's probably
(11:05):
a lot of people still with loopisthat don't know they have it, and
that's sort of confound some of thenumbers, but overall, I'd say it's
fairly static. Is your organization involvedin studies on Loopus beyond the research that
we've talked about, clinical trials thingslike that. Yeah. So we when
we started our organization, because wedidn't know why people get loopis, there
(11:31):
was a great emphasis on supporting basicscience, basic biology of science. So
a lot of discover research within anacademic setting is something that the Loopus Research
Alliance had invested a lot in andwe still do. But over the period
of time, as we've learned aboutthe specific pathways that drive the disease,
for the most part, we've sortof augmented how we support science in the
(12:00):
clinical space and the translational space closercloser to the human being. And so
we established an affiliate organization in twentyeighteen called Loopus Therapeutics. They're a wholly
owned affiliate of the LRA, andtheir charge was to essentially take the learnings
that the organ we supported, thebasic science, the translational learnings, and
(12:22):
to work with pharmaceutical companies and developingdrugs or potential new therapies within an infrastructure
of clinical trial sites that we supportthroughout North America, and that apparatus or
that infrastructure is called our Loopus ClinicalInvestigators Network are LOOSEN and this is a
(12:43):
group of academic medical centers, fiftyfive of them within North America, primarily
in the US. What we dohave a number of centers in Canada and
they partner with our affiliate to sortof conduct clinical research. And here to
four Lupas Therapeutics is involved in abouttwenty five percent of the act of lupus
(13:05):
clinical trials that are taking place withindustry, with the biopharmaceutical industry, and
that's growing and so we're really excitedabout that, and I think it really
shows the breadth of the type ofresearch we do from the basic science,
the cellular science, all the waythrough to the clinic where it's being evaluated
(13:26):
in the context of the clinical trial. And that's really started happening since twenty
eighteen and will continue to For thosewho either have lupus or for family members
friends of those who've been diagnosed withlupus, what are some of the resources
that you have available online that theycan check out to learn more about all
(13:48):
of this. Yeah, so,you know, one of the cool things
that we we did for Lupus' AwarenessMonth is we sort of developed a toolkit
that really helps individuals who were justdiagnosed. And as you can imagine with
any diagnosis of any disease, it'sit's it's extremely overwhelming, as you can
(14:11):
imagine it. And because lupas iswidely misdiagnosed and misunderstood, raising this awareness
is raising awareness is critical. Sowe developed a social media kit that it's
on our website at this research dotorg and it's really put together, I
think very well. It's got readyto use tools for for spreading the word
on on on what lupus is,where what you how you can get connected
(14:35):
to a healthcare provider within our network. It's on all of our social media
platforms uh and we think it's agreat resource and in many ways will make
a big difference to those that aresearching for answers and it's and there are
plenty of other opportunities on our websiteto learn more about how you can get
involved beyond just sort of where doI go to get seen? Because I
(15:00):
think one of the biggest things ryanthat we see in loopis and sort of
getting new therapies is there's really alack of participation that's representative of the patient
population in clinical trials. And theonly way that we can get people off
of prendizone long term or some ofthese chemotherapeutic agents that are used Methodred's SAKESOX
(15:24):
and cyclophosphamind et cetera, is tohave better drugs that are tailored. And
the only way that happens is ifyou participate in research. And I think
one of the big things that we'retrying to push as an organization is that
while we want to support people intheir journey make sure they're getting the right
care, we also want to understandwhat the benefits and the advantages are of
participating in research. There's plenty ofways to do that with our organization through
(15:50):
clinical trials, but also in noninterventional ways. And we hope that when
you come to our website, peoplecome to our website to learn about those
ways to get engaged with us aswell get the resources they need to make
some informed decisions about their own care. And again, that website is Lupusresearch
dot org. That's Lupusresearch dot org. May was Lupus Awareness Month, and
(16:12):
with us we have president and CEOof the Lupus Research Alliance, Albert t
Roy. Albert really appreciate it takingtime to come on the show, and
thank you so much for the greatwork you're doing on this disease and all
the research tied to it. Andit's been a pleasure. And you know,
it takes a village, and Ihope that people that hear this and
(16:33):
listen to it can get involved withus and looking forward to the next time
we can connect. We make itwork no matter how, even if we
can't be together in person, we'realways together in spirit, it seems,
and today we're on the phone together. It is the one and only the
incredible ray of sunshine known as WhitneyReynolds from The Whitney Reynolds Show. Hello.
Hello, and you are right.We are always together in spirit,
(16:55):
especially when it comes to elevating womenin our city who are making their mark.
I am so excited to bring youthis month's Whitneys Women with Kristen.
Kristen, welcome to the show.Ah, thanks so much for having me.
You know, Kristin, you area repeat Whitneys Woman, meaning that
you are doing good continually for ourcity, which is incredible. So tell
(17:18):
us a little bit about your nonprofit. So our nonprofit is called Always be
Kind. We developed Always be Kindwhen my husband Larry was very, very
sick with cancer and we were justsuper overwhelmed with all of the kindness shown
to us by others. And wereally do believe that that kindness in some
(17:40):
way helped him to recover. Sowe wanted to repay that kindness somehow,
and this is what we came upwith. You know, when people are
faced with adversity and health issues,sometimes it's easy to want to curl up
and say, Okay, maybe Iam just going to wave my white flag
for a second. But this isreally when you guys doubled down. One
(18:02):
thing I love about your story isthat you didn't wait very long to start
this. No, no, wedidn't. We really probably when he was
the sickest is when when we decided, yeah, we're going to do this.
And so far we've you know,we've raised over ten thousand dollars.
(18:22):
We donated to two main beneficiaries alreadybeing the Northwestern Medicines Oncology their Patient Family
Assistant Son and the University of Chicago'sAdult Center Emergency funds. So yeah,
we've helped over one hundred people sofar with parking, meals travel. That's
really where our funds go, youknow, to help and with the with
(18:45):
the small expenses that add up becauseof a cancer diagnosis. Absolutely, and
you know, Brady the name I'mgonna bring you into this Brady, because
you are one of the mates people. I know you have a heart for
people, can you? They gotthe name always be kind. That should
have been like the first thing ifyou're to start a nonprofit, it should
have the word kind and you shouldalways do it. So congratulations on the
(19:07):
best name ever and having it availablefor you fits perfectly. Thanks so much.
I know we were so excited aboutit. We couldn't believe it ourselves,
to be honest with you. Soyeah, we're really happy about it.
Going to your website was like andthere it is always be Kind.
But it is those small acts ofkindness that really do add up. And
I love it, you say,you know, we've been doing paper parking
(19:30):
or doing little things invite our listenersinto the things that you do whenever someone
is diagnosed for cancer. So Imean what we do by donating to these
two different funds that I that Imentioned, they will actually disburse the funds
to people. You know, justfor instance, if you if you are
(19:52):
sick and can't go to work,you could be struggling paying your bills,
so they will help you do that. They will discourse the fund to do
that. So it just it's thelittle things that we don't really think about
that really do add up. Thesesmall expenses add up and then before you
know it, you're really in ahole. So that's where we were,
(20:14):
like, my gosh, we youknow, we did feel fortunate that we
could do these things, but lookingaround us, a lot of people couldn't.
You know. In one thing,like I mentioned before, even if
you can't help monetarily, it wasI mean my head, friends and clients
that the overwhelming response of kindness,even just by kind words or recipes that
(20:38):
people would give us, just youcan always be kind. It doesn't have
to just be a monetary kindness isamazing and it's so true. Okay,
so we talked about how fast youguys acted on this, and you've founded
the nonprofit, but now you mighthave your first walk and it's coming up.
(20:59):
Tell our listeners how they can getinvolved, how they can join forces.
Oh yeah, we are so excited. So we have our first annual
five k walk run coming up Junetwenty ninth. The event starts at the
dock at Montrose Beach, which ifyou don't know, is located at two
hundred West Montrose Harbor Drive. Thewalk will start at nine am, but
(21:21):
registration will begin it at eight.Everybody's welcome, rain or shine, and
you can sign up by going toalways be Kind dot org. And like
I said, if you can't makethe event or you'd still want to help,
you can always make a donation bygoing to always be Kind dot org.
And then if you can't make amonetary donation, just be kind to
(21:41):
each other. And that's the bigyou know, that's the biggest thing.
Just be kind. You never know. It costs nothing to be kind,
but it can be priceless in itsimpact on somebody's life, you know,
and we feel that it was inours, especially when someone's in throes of
getting that cancer diagnosis. You neverknow what other people are going through,
(22:04):
and so the kindness is just veryvery crucial to what makes things, you
know, continue, And so Iyou know, Christen, I've known you
a long time and I've known forthe answer diagnosis tell us how Larry is
doing today. Larry is doing great. He is healthy, he's coming up
on two years. He'll have anotherscan. I believe it's next week,
(22:29):
and everything looks good, and youknow, we just we thank God and
we're just we're so happy. Buthe's very strong, he's very healthy.
It was terrifying. We didn't,you know, at the time. I
don't think we realized how afraid wewere. But you know, looking looking
back on it, you know,we're we're so lucky that that we had
(22:52):
the kindness that was shared to usby everybody else. It was really remarkable.
But yeah, he's he's very healthynow, he's really really excited.
He'll be at the wall. He'sbehind He's going to be at the walk.
Oh. Absolutely, yep, we'llbe we'll be there. We have
friends, family, everybody's coming.So yeah, okay, great, and
we want our listeners to as well. Please give us that website again where
(23:15):
they can get involved. They canget involved at always be kind dot org.
Awesome, Kristin, thank you somuch for coming on. Thank you,
thanks for having me guys day.Yeah, and if they can't show
up that day, they can alsoshare kindness with the world. You're spot
on with that concept. Thank youso much, Christina, Thank you.
(23:37):
I need to know is their merchavailable. I need to always be kind
T shirt to be a walking billboardfor this cause because that oh yeah,
we definitely yeah when you when youshow up for registration, there's T shirts
there that come with your registration.They'll be great. We'll definitely get you
guys one so's it'll be perfect.Love it, Whitney. That's like your
mantra. It really is like whenthey told me that this as their nonprofit
(24:00):
and it's rooted in kindness and youknow, Larry had, you know,
a tough cancer diagnosis. But everybodythat we meet is going through something,
right, It's kind of inevitable withour world. And if we can be
their light that day or in thatmoment, that is what's up. So
I'm so excited that they are havingtheir first annual walk because I know the
(24:22):
type of impact they are having onour community. Yeah, and speaking of
light and shining, it's you.That's what you do on your show.
I know You've got a lot ofbig things coming up. We do.
We are in the midst of planningfor the fall, which I just want
to enjoy the summer. But becausewe're in summer, that means our current
season is still running. We gotour numbers back and it is really incredible
(24:45):
how many people we are reaching withour topics of hope. And you know,
the Whitney Reynold Show is founded onbeing that safe space for stories,
and the stories that came out thisseason are ones that remind you that even
in tough chapters, you can getthrough. So I highly encourage everybody to
watch on World Channel, which isone of your PBS stations. We are
on Saturdays and Monday. It's likeI said, our current season is going
(25:08):
and we're planning for the fall,and it's never too early to talk to
holidays. Believe it or not.We are scouting for Whitney's wish List,
So any of our listeners have anyamazing products for businesses, let us know
because we are scouting that. Nowyou can go to Whitney Reynolds dot com
for more info. Thank you somuch for listening, and thank you for
being a part of the weekly showtoday and every single week on iHeartRadio.
(25:32):
We really appreciate you always being apart of this program. And of course
you can catch this episode and allthe previous episodes up on our free iHeart
app right now. Just search forthe Weekly Show and if you know somebody
who would make a difference in ourcommunity and who would be a great guest
to have, please feel free toemail me at Paulina at iHeartMedia dot com
and I'm going to try my bestto get them on the Weekly Show as
(25:52):
well. Thank you, have agreat weekend, Stay safe, Chicago,
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