Episode Transcript
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(00:00):
Hello, and welcome to the weeklyshow here on iHeartRadio, A ninety three
nine LIGHTFM, one All three fiveKids FM, and Rock ninety five to
five. Every week, we're hereto discuss a variety of topics that matter
to Chicagoland, from health, education, and so much more. Today on
the show, Brady interviews Jeff Becker, a founder of Sound of Summer and
chair of SMB Entertainment and Media LawPractice Group. They'll be talking about their
(00:20):
six annual music showcase. Ryan Gormanchats with Alenni Towns, director of No
Kids Hungry Campaigns. They'll be talkingall about how to raise awareness of programs
available during the summer months to makesure children need to receive the meals and
nutrition they get throughout the school year. And Ryan Gorman also interviews Albert t
Roy, President and CEO of theLoops Research Alliance. So let's kick off
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the show. May was Lupus AwarenessMonth and to discuss the disease and what's
being done to combat it. I'mjoined by the President and CEO of the
Lupus Research Alliance, Albert t Roy. You can learn more at Lupusresearch dot
org. Albert, thanks so muchfor taking a few minutes to come on
the show, and let's start withan overview of how the Lupus Research Alliance
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first came about and the work thatyou do. Yeah, Ryan, thank
you for having me. You know, the the LRAA really started back as
an organization called the Alliance for LupusResearch in nineteen ninety nine. It was
founded by a gentleman named Ambassador Robertwood Johnson the fourth or Woody Johnson,
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who started the organization because of hisone of his daughters was suffering from lupus.
And it's morphed over the years.It's combined with other organizations to culminating
in twenty seventeen to become the LoopisResearch Alliance. And we're a very simple
organization to understand. You know,our vision is to our vision is frankly,
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to free the world of loopus.And we do that through achieving our
mission, and our mission is puttingpeople with lupas at the center of all
we do. We drive the discoveryand the development of the next generation diagnostics
for lupis as well as curative treatments. Can we do this through forging strategic
collaborations with industry and researchers in fundingwhat we think is the best research in
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the world really from the bench tothe bedside. And you know, because
of this, because of our focus, because we're very focused on just research,
we are the world's largest private funderof loopus research, non a governmental
funder of lupus research in the world. So you know, we're doing a
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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
chronic autoimmune disease and infects millions aroundthe world. Nine out of ten people
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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.
And we don't know why, rightwomen not attend people that get are
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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 immunesystem, and your immune system is really
used to protect you against infection,but instead with loopus, your body essentially
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doesn't leave your body alone. Andwhat I mean by that is that your
immune system unfortunately creates antibodies that aremistakenly recognized by your immune system in its
normal cells as and essentially at taxyour means to some tax your own self,
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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 the
eyes and over the nose, fevers, severe fatigue, joint inflammation, skin
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inflammation, and sometimes the skin canbe very disfiguring. And so that's lupus
in a nutshell is essentially your bodydoesn't leave your body alone, and we
don't know why, but we're workingreal hard to find out. Does this
have the potential to be a deadlydisease? It can because of its how
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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
treatments that were developed for other diseases, or people receive high doses of steroid
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called premosome, and cancer therapeutic agentsare not intended to be given in a
chronic setting, but they are inloopus sometimes for the most severe cases.
Premosome, which is incredible for treatinginflammation and acute setting, is not intended
to be given over twenty five tothirty to forty years. And so what
that does is people who are receivingthese treatments to sort of support their care.
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There's toxicity associated with long term useof these drugs, and that's why
we are so focused on really understandingthe biology of the disease, understanding the
pathways of what gets triggered in anindividual that leads to their loopus, and
really developing targeted therapies that are notas toxic but really tailored to support the
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care of these individuals and not repurposingthings that were never intended to be given
over ten, twenty, thirty,forty years. And so because of the
toxicity of some of the drugs,people's quality of life suffer, and that's
what ultimately sometimes can cause this diseaseto be fatal. However, I will
say that there is one component ofloopus that has a fairly high mortality rate,
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and that is when lupus involves thekidneys, and that's called loupus nephritis,
And so we have to pay attentionvery closely to these patients because over
time, the damage that accrues ifthe treatments aren't good is that people sometimes
go into kidney failure in the transplant. When you have to go to a
transplant, then there's a whole setof other risks that come into the pictures.
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So well, you know, oneof the things that we've done is
there are two drugs approved for lupus, and those two drugs really were born
out of the research that the LRAand its legacy organization supported. We're proud
of that. And there's also adrug that was recently improved a couple of
years ago for lupis nephritis that theLRA had invested some foundational research in that
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also led to that. So whilethere's only three therapies available to people broadly
for lupus, the LRA has hada hand in it, and we're excited
about the future of some new therapiesthat are also being tested clinically and then
match best pace for best drug interms of the numbers of people diagnosed with
lupus. Has that increased, itall decreased, remained steady. What can
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you tell us about that? Yeah, I think the prevalence of lupus is
probably fairly static. I think we'regetting better at diagnosing it early because the
awareness of loopus has been increased.And that's why Lupis Awareness Month and May
is so important. One not onlyhighlight the disease, but it also increases
awareness. And so I think becauseof that, because of the attention it's
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getting I ought to get, thereare things that are helping us diagnose it
better. But I as far asyou know, the prevalence of the disease,
to my knowledge, and again Idon't have it in front of me
to quote, but from my knowledge, I think it's fairly static. You
know's millions of people worldwide have loopus. You know, in the US,
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depending on where you read, itranges from one hundreds of thousands of patients
to a million. You know,I think that's to me to be a
bit debated. Bottom line is there'sprobably a lot of people still with loopis
that don't know they have it,and that sort of confound some of the
numbers, but overall, I'd sayit's fairly static. Is your organization involved
in studies on Loopus beyond the researchthat we've talked about, clinical trials things
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like that. Yeah. So wewhen we started our organization, because we
didn't know why people get loopis,there was a great emphasis on supporting basic
science, basic biology of science.So a lot of discover research within an
academic setting is something that the LoopusResearch Alliance had invested a lot in and
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we still do. But over theperiod of time, as we've learned about
the specific pathways that drive the disease, for the most part, we've sort
of augmented how we support science inthe clinical space and the translational space closer
to the human being. And sowe established an affiliate organization in twenty eighteen
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called Loopus Therapeutics. They're a whollyowned affiliate of the LRA, and their
charge was to essentially take the learningsthat the organ we supported, the basic
science, the translational learnings, andto work with pharmaceutical company and developing drugs
or potential new therapies within an infrastructureof clinical trial sites that we support throughout
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North America and that apparatus or thatinfrastructure is called our Loopus Clinical Investigators Network
are LOOSEN and this is a groupof academic medical centers, fifty five of
them within North America, primarily inthe US. What we do have a
number of centers in Canada and theypartner with our affiliate to sort of conduct
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clinical research. And here to fourLupis Therapeutics is involved in about twenty five
percent of the active Loopus clinical trialsthat are taking place with industry, with
the biopharmaceutical industry, and that's growingand so we're really excited about that,
and I think it really shows thebreadth of the type of research we do
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from the basic science, the cellularscience, all the way through to the
clinic where it's being evaluated in thecontext of the clinical trial. And that's
really started happening since twenty eighteen andwill continue to For those who either have
lupus or for family members friends ofthose who've been diagnosed with lupus, what
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are some of the resources that youhave available online that they can check out
to learn more about all of this. Yeah, so, you know,
one of the cool things that wewe did for Lupus' Awareness month is we
sort of developed a toolkit that reallyhelps individuals who were just diagnosed. And
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as you can imagine with any diagnosisof any disease, it's extremely overwhelming,
as you can imagine it. Andbecause lupas is widely misdiagnosed and misunderstood,
raising this awareness is raising awareness iscritical. So we developed a social media
kit that it's on our website atlupusresearch dot org and it's really put together,
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I think very well. It's gotready to use tools for for spreading
the word on on on what loopusis, where what you how you can
get connected to a healthcare provider withinour network. It's on all of our
social media platforms uh, and wethink it's a great resource and in many
ways will make a big difference tothose that are searching for answers and it's
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and there are plenty of other opportunitieson our website to learn more about how
you can get involved beyond just sortof where do I go to get seen?
Uh, because I think one ofthe biggest things ryan that we see
in Loopus and sort of getting newtherapies is there's really a lack of participation
that's representative of the patient population andclinical trials. And the only way that
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we can get people off of prendizonelong term or some of these chemotherapeutic agents
that are used Methadred's sakes, Talxand cyclophosphomind, et cetera, is to
have better drugs that are tailored.And the only way that happens is if
you participate in research. And Ithink one of the big things that we're
trying to push as an organization isthat while we want to support people in
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their journey and make sure they're gettingthe right care, we also want to
understand what the benefits and the advantagesare of participating in research. There's plenty
of ways to do that with ourorganization through clinical trials, but also in
non interventional ways. And we hopethat when you come to our website,
people come to our website to learnabout those ways to get engaged with us,
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but as well as get the resourcesthey need to make some informed decisions
about their own care. And again, that website is Lupusresearch dot org.
That's Lupusresearch dot Org. May wasLupus Awareness Month, and with us we
have president and CEO of the LoopusResearch Alliance, Albert t Roy. Albert
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really appreciate it taking the time tocome on the show and thank you so
much for the great work you're doingon this disease and all the research tied
to it. And it's been apleasure. And you know, it takes
a village, and I hope thatpeople that hear this and listen to it
can get involved with us and lookingforward to the next time we can connect.
Thank you very much. And joiningme right now is a man that
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we've hung out in live music venuestogether and his event coming up is all
about music and charity. Welcome tothe program, Jeff Becker, founder of
the Entertainment Media Law and founder ofSound of Summer. Jeff, Welcome to
the show. Thanks for having me, Brady. I'm so glad we could
talk about your event coming up.It sound a summer. It sounds like
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it's been going on for a minute. Tell everybody all about what's going to
go down at the House of Blues. Love to Yeah SOW. This Summer
is a charitable concert event that Ikind of envisioned a few years before COVID
started. It's the whole idea behindit. My law firm Swanson, Martin
and Bell thought of the idea ofhow can we give back to the community
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right and how we raise money forgood causes and how can we do it
in a fun way. So Iformed the Entertainment Media Practice Group at our
law firm about almost fifteen years ago, and over the course of those years
have formed really great relationships with avariety of different musical artists and came up
with the idea of putting together ashow where a handful of artists will come
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together and perform live at the Houseof Blues. And when we did that,
the idea behind it would be thatwe've raised money for a charitable cause,
whatever it might be. We changeit every year depending upon what's interesting
to the artists, what's interesting toour staff at the time. And this
year we found a great organization calledMusically Fed, who's going to be the
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recipient of all the profits from theshow this year. Tell us more about
musically Fed. Musically Fed is areally neat organization. The entire point of
this nonprofit is to team up withartists and festivals and promoter and venues to
gather unused food at the end ofthe night and find ways to coordinate to
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bring it to the homeless and tothe needy. Right, So if you're
at Lallapalooza, who for example,as a partner of music, we fed
and the night ends, and there'sa lot of leftover food at catering or
with the the you know whatever foodtown row is, whatever it's called there,
they'll make sure that food doesn't goto waste. They'll come in,
they'll collect the food, and they'llfind different local organizations to donate that food
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too. So people don't start wow, I mean you're talking about all of
like our favorite things, right,helping out the community. Food and music.
It's like the perfect commodity. It'slike the perfect combination. Such a
cool organization. Now, so you'vegot live music happening, and this event
is happening at the House of Blues, Sound of Summer. Give us the
date and time you got it.It is Thursday, June thirteenth, so
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just about a week from now whenyou and I are talking, but it's
next week. So June thirteenth,doors open at six pm at the House
of Blues and the first act goesout probably around six forty five or so.
Yeah, we're just talking before theinterview too. It's the perfect time
too, because it's a Thursday nightwhere everybody's nobody works on Fridays in Chicago
anyways, So you just get outof work, walk on over to the
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House of Blues, enjoy some awesomemusic, and meet some people and kind
of like there's probably like a lota lot of people in the entertainment world
in general that you can get toknow and kind of mingle with too.
Right, Yeah, there's a greatnumber of organizations that are sponsoring this.
I hadn't even gotten to this partof it yet, but like there's a
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lot of organizations that have come togetherto really help make this event happen.
Right. Virgin Hotels is a hospitalitysponsor who's helping house some of the artists
who are traveling in for the event. Lakeside Bank is a sponsor. A
Currently Healthcare is a sponsor. Allthese different organizations are coming together to make
sure this event works and that wecan have money at the end of this
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event to give to Musically Fed.So there'll be a great number of folks
there attending. There's a public saleobviously, you have the tickets, you
can go Tondosummer dot Live to buytickets. You can go directly the House
of Blues or Live Nation or ticketMaster to buy tickets. But there's a
great number of organizations involved in helpingmake this event work. What was I
going to say, Brady, Ithink it's important. Here's what I was
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going to say. Of all thesedifferent organizations, there's also so many wonderful
organizations who have donated raffle prizes.Right. So, for example, if
you're a music fan, obviously youwant to come to the show and catch
the show, but there are alsoa lot of to Loza tickets being raffled
off, Sport tickets being raffled off, Riotfest tickets, if you're a fan
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of sports. We've got Sky tickets, and White Sox tickets, and Wolves
tickets, We've got Spad's and allthis different memorabilia that's being raffled off.
So beyond just the show itself,we're going to have that going on as
well as a food drive. Right. We with given at the event itself
this year is focused around helping theneedy, the homeless, the hungry,
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and musically fed. As a recipient, we thought it would also be a
great idea this year to incorporate afood drive around it too, So if
you come that night, there willbe a huge food drive drop off in
the front of the venue in thelobby. We could bring canned goods with
you as well to drop off.A plus all round. I love all
of it. So it's going downThursday night, House of Blues. You
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can learn all about it. It'ssound off Summer Dot Live. But you
can get your tickets where you normallydo it a ticket Aster Live Nation all
that. But yeah, what areally super cool event now for people that
are listening because you're on a bunchof different radio stations with this interview,
so I'm guessing the music that they'regoing to experience is a little bit of
everything. Yeah. We have fivegreat artists performing this year, starting with
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Nikos Siegel, formerly known as DonnieTrumpet from Kids These Days Back in the
Day and Amazing for Mentalist Trumpeter anall around an amazing musician. He's performing
that night. We have a localband called Capital Soire performing an amazing kind
of rock pop band. We havean artist named Austin performing ostn amazing female
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pop kind of pop rock artist aswell. Kid Quill is coming in kid
Quill from Indianapolis but now in LosAngeles, is an amazing vocalist and rapper.
And then we have Natalie Jane stoppingoff the Knight, who is just
an amazing vocalist who you might knowfrom TikTok and from a variety of different
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parking garages that she's performed in.But she's just gotten off of her world
tour. Actually it was practically soldout and it's coming back to Chicago after
selling out Subterranean in about ten minutes. So for anyone that couldn't catch her,
then catch her now if you can. So cool. Thanks for taking
the time, Jeff, can't waitfor your event. Have an awesome time
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and we'll see you over there theHouse Blues. Grady, thanks so much
for having me. We're joined bythe director of No Kid Hungry Campaigns,
a Laney Town, so you canlearn more about the work this organization does
at No Kid Hungry Dot Org.Again, that's No Kid Hungry Dot org.
Elane, thank you so much fora ticket. A few minutes to
come on the show. And beforewe get to this big issue facing so
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many families here during the summer months, when it comes to making sure children
are fed across the country. Let'sstart with an overview of how this campaign
came about and your goal, themission, the work that you do.
Yeah, thank you for having me. No Kid Hungry campaign is committed to
ending childhood hunger in America. Weknow it can be done, and we
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know that food and security shouldn't existin this country, but unfortunately, we
have one in five kids living withhunger. We work to connect dots to
bring to help bring federal, Interritianprograms to communities that need them or access
to healthy meals. And the amountof work that you have to do because
of the need, it really isincredible, and I'm assuming things like high
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prices and just budgets being strained thesedays. It's real driver of those in
need of the services you provide.Absolutely, Unfortunately, millions and millions of
families across this country are living paycheckto paycheck and when there are increases in
food costs or other other challenges health, transportation, other issues that hit a
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family, unfortunately, meals are sometimesthe thing that they have to skip or
to go without. And research showsthat kids with based food and security have
real health and education impacts. Soit's something that we know no kids should
go through and really want to makesure families have access to the resources they
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need. And you don't have tobe really well versed in this issue to
understand that. I could just thinkback or just think right now. No
matter what your job is or ifyou're in school, if you're really hungry
while you're trying to work, it'sgoing to make things that much harder.
And that's what unfortunately, so manykids across the country are dealing with on
a daily basis. Absolutely absolutely we'veall experienced it, even if we have
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thankfully not had to face poverty orfood and security, but face yeah,
what the challenge is. It's like, and you think about it, for
a young kid sitting in school whohas a headache or a tummy ache because
they haven't had enough food, theycan't pay attention, or worse, they're
pulled out to the nurse's office.They're not getting the education and support and
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also the emotional and impacts that hason a kid who is facing that or
facing a fear of not having enoughfood for the day. So explain how
you conduct this operation, how youhelp prevent children across the country from being
hungry. One of the big thingswe're really focused on right now, which
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is timely, is the summer.The summer meal gap. So millions of
kids, thirty million kids access assistantsat school, so they get a school
breakfast or a school lunch while they'rein the school system. But of course
school is breaking already has for thesummer. Summer should be a time of
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fun and celebration for kids, butwhat we see in so many communities is
what it also is is a lossand access to nutrition assistance. And we
see food and security increase for caseduring the summer months. So one of
the big things that we're focused onis expanding access in the summer. And
there's a couple of really great programsand actually new programs that Congress just passed
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into law that provides support for familiesduring the summer months. We're joined right
now by a Laney Towns, directorof No Kid Hungry Campaigns. You can
learn more and support all of thiswork at No Kid Home dot org.
So how is this going to workfor the summer. Yeah, So one
really exciting new program is called SummerEBT or in some states it's called sun
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Bucks, and what it is isa grocery benefit that's been given to eligible
families. If you have a schoolage child that qualifies, you get one
hundred and twenty dollars in a cardthat you can use at grocery stores wherever
really you shop in your community.So it's a great way to get access
directly to families, for families tobe able to just purchase more for what
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their kids need during the summer months. It's not going to be in all
in all states this summer, it'sthe first year implementing, but it'll be
in thirty seven states and five territories, three tribal nations this summer, and
we're working with states to really getthat program up and running so that they
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can offer those benefits and that familiesknow about them. So that's one really
great resource. The other are summermeals. So in many communities, schools
or community organizations can offer meals atno charge to families. They can come
pick up a meal, or mealsare often provided on site in rural communities.
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There's this new option for families topick up multiple meals at a time.
So we're working with schools and communitydistricts to help them operate those programs.
And to get the word out tofamilies. How can families take advantage
of these programs? How can theyparticipate in this if they are in need?
Yeah? Absolutely, So a coupleof things. One, if you're
interested in in Summer Meals, reallyencourage parents and caregivers to use our texting
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line, so you can simply textthe word food FOD or comita to three
oh four three oh four and they'reproviding your zip code. You have access
to what information around summer meals areavailable for your kids in your community.
So that's one way to access whatto learn more about meals for the grocery
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benefit program for you know what wecall Summer ABT or sun Bucks. Would
really encourage families to look up attheir state what's available, or they can
visit our website no kinhungry dot orgslash Benefits to learn about if they're eligible
or if their state is participating inthe program this year. So what have
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you seen in recent summers when itcomes to the amount of participation throughout the
country for a program like summer Meals. Yeah. Well, the reason we're
really excited about these new provisions andthis new law passed by Congress is that
there's just been really low participation inthe existing programs. So only thirteen out
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of one hundred kids who are receivingmeal assistants in the school year are having
access to summer meals. It's justreally it's hard to reach kids during the
summer without those infrastructure systems. Theymay be staying at home, they can't
get to a site. So we'rereally excited about this new opportunity to get
benefits right in the hands of familiesand in rural communities, to bring meals
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to families instead of requiring those kidsto come to sites. Let's talk about
what takes place during the school yearand how that process works, the work
that you do with no kid hungryto ensure that children across the country have
meals while they're attending school. Yeah, absolutely, school meals are critical resource
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for families. As I mentioned,thirty million kids benefit from school breakfast and
school lunch. We know these programswork. What we try and do is
provide technical assistance and support to schoolsto make sure they're reaching all of their
kids. Not every child is participatingin a breakfast program, even if it's
available in their community, and sowe work with school systems to figure out
(29:02):
how what's the best way they canoperate their program so that kids are actually
participating and consuming the meals. Sowe offer technical assistance and grant funds,
and I'm getting the word out tomake sure our families are aware of the
benefits they're they're eligible for. I'mRyan Gorman with a Laney Towns director of
No Kid Hungry Campaigns. You canlearn more at no Kid Hungry dot org.
(29:23):
You also do a lot of workmaking sure kids have meals at home.
Can you take a moment and explainhow that particular program works. Yeah,
SNAP is one is a critical program. SNAP or the food stamps program
is our first line of defense againsthunger in this country, and it's really
important that families are eligible, knowthat they can get benefits and how so.
(29:47):
A lot of our work is connectingfamilies to those resources. And like
I mentioned, our website noko hungrydot org slash Benefits provides information if you
think that you may be eligible andare looking for more details about how to
enroll in the program. I noticedyou offer a number of grants to different
(30:07):
organizations working to help feed kids acrossthe country. Can you explain those partnerships
and how that process works. Schoolsand community organizations are doing fantastic work to
provide for their communities. They are, you know, whether that's the local
why or Boys and Girls club,or parks and rec center or just your
(30:32):
local school, are doing amazing work. But these are hard programs to operate
and there's not a lot of moneyin it and support. So what we
try and do is offer the assistanceneeded to make sure the program is strong
and make sure they can reach asmany as many kids as possible. Sometimes
that's helping a school district secure abus so that they can take meals out
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into the community, or maybe it'sproviding capacity to a local y or parks
and rex so they have refrigeration andthe right materials to keep food at temperature
so they can offer meals. Sothere's a lot of a lot of support
needed to make sure that these programscan run smoothly and meet kids and families
(31:14):
where they're at, and we tryto lend a hand in grant funds and
other support so they can do thatgreat work. And of course they make
all of this great work happen.You need a lot of support, So
how can our listeners do just that. What are some of the different ways
they can make sure No Kid Hungrycontinues to help kids all across the country.
(31:36):
There's a couple of ways, youknow. Of course, donations and
support to No Kid Hungry is reallyhelpful and broadening the reach of our program.
I think the other key way isgetting the word out. Food and
security impacts every single community in thiscountry. Every single county faces families that
are food and secure, but itcan be a sort of hidden program a
(31:57):
problem and be unfortunately some shame orstigma associated, and so I think it's
really important to remember that we don'talways know what families are going through,
we don't always know who needs support, so it's helpful to get the word
out and to share. So inthe case of Summer Meals, would really
again encourage folks to get the wordout about our texting service, to share
(32:21):
that information so that if families couldbenefit from meals, they know where to
go. And that's by texting foodor Comita to three oh four, three
oh four and making sure we cansupport our support, our neighbors and our
community and getting access to what theyneed. And there's ways for younger people
to get involved in support this missionas well. Right, absolutely, And
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I think that connecting the dots tovolunteer at sites and supporting the program in
awareness is a really critical piece.And I also want to know there are
ways that companies and small businesses chefscan get involved and help make sure that
no kid goes hungry here in theUS. Yeah. Absolutely, We really
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believe that everybody has a strength toshare and that this problem of food and
security is too great that we needeverybody's hands on deck to support it.
So we're really thankful for just thebroad spectrum of support, like you said,
from from chefs to corporate partners,to restaurants to individuals who are who
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are lending a hand in terms ofgetting the word out and donating their time,
their capacity, their resources, holdingbenefits and others to make sure we
can tackle this issue. Director ofNo Kid Hungry Campaigns A Laney Towns with
us you can learn more and supportthe work they do. Again a No
Kid Hungry Dot Org. Alaney,thanks so much for the time and the
(33:57):
work you're doing. Of course,we really appreciate it. Thank you so
much, and thank you for tuningin to an episode of the Weekly show
We appreciate you being here every singleweek. We placed this episode and all
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