Welcome to iHeartRadio Communities, a public affairs special focusing on the biggest issues impacting you. This week, here's Ryan Gorman. Thanks so much for joining us here on iHeartRadio Communities. I'm Ryan Gorman, and we have a few very important conversations lined up for you. In just a bit, we'll check in with the director of the No Kids Hungry Campaign, which is working to make sure children don't go hungry during the summer months when school is out. But
right now to get things started. May was Lupus Awareness Month and to discuss the disease and what's being done to combat it. I'm joined by the President and CEO of the Lupus Research Alliance, Albert t Roy. You can learn more at Lupusresearch dot org. Albert, thanks so much for taking a few minutes to come on the show. And let's start with an overview of how the Lupus Research Alliance first came about and the work that you do. Yeah,
Ryan, thank you for having me. You know, the LRA really started back as an organization called the Alliance for Lupus Research in nineteen ninety nine. It was founded by a gentleman named Ambassador Robert Wood Johnson the fourth or Woody Johnson, who started the organization because of his one of his daughters was suffering from lupus, and it's morphed over the years. It's combined with other organizations to culminating twenty seventeen to become the Loopis Research Alliance. And we're a
very simple organization to understand. You know, our vision is to our vision is frankly, to free the world of loopus and we do that through achieving our mission, and our mission is putting people with lupus at the center of all we do. We drive the discovery and the development of the next generation diagnostics for lupus as well as curative treatments, and we do this through forging strategic collaborations with industry and researchers and funding what we think is the best research
in the world really from the bench to the 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 funder of lupus research, not a governmental funder of lupus research in the world. So you know, we're doing a lot in space and we're excited about the future. I think most everyone has heard of lupus, but many listening might not really understand what exactly it
is. Can you explain that for us? Yeah? Sure. Lupus is a chronic autoimmune disease and affects millions around the world. Nine out of ten people with lupus are, unfortunately women. It's most often diagnosed in the child bearing years for women, and that's between the ages of fifteen and forty four. Women of color are especially at more risk, three times more likely to get lupus, and we don't know why. Right ten people that get are
women. We don't know why women of color are disportionately affected. That's what we're seeking to solve. The easiest way to explain it is essentially people with loopus. Everyone has an immune system, and your immune system is really used to protect you against infection, but instead with loopus, your body essentially doesn't
leave your body alone. And what I mean by that is that your immune system unfortunately creates antibodies that are mistakenly recognized by your immune system in its normal cells as foreign and essentially attax your immune system, tax your own self, your healthy tissue, and this manifests in the organs and manifests in the skin.
The most common symptoms that we see with people who developed loopus our skin rashes, particularly in the face, the butterfly rash which extends below the eyes and over the nose, and fevers, severe fatigue, joint inflammation, skin inflammation, and sometimes the skin can be very disfiguring. And so that's loopus in a nutshell is essentially your body doesn't leave your body alone, and we don't know why, but we're working real hard to find out. Does this
have the potential to be a deadly disease? It can because of its how chronic it is, because it's that there is no cure. I think what makes lupus potentially fatal is that the treatments that most people receive for loopus are treatments that were developed for other diseases, or people receive high doses of steroid called premosome and cancer therapeutic agents are not intended to be given in a chronic
setting, but they are in loopus sometimes for the most severe cases. Premosoone, which is incredible for treating inflammation in acute setting, is not intended to be given over twenty five to thirty to forty years. And so what that does is people who are receiving these treatments to sort of support their care.
There's toxicity associated with long term use of these drugs, and that's why we are so focused on really understanding the biology of the disease, understanding the pathways of what gets triggered in an individual that leads to their loopus, and really developing targeted therapies that are not as toxic but really tailored to support the care of these individuals and not repurposing things 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 disease to be fatal. However, I will say that there is one component of loopus that is has a fairly high mortality rate, and that is
when lupus involves the kidneys, and that's called loupus nephritis. And so we have to pay attention very closely to these patients because over time, the damage that accrues if the treatments aren't good is that people sometimes go into kidney failure and then the transplant when you have to go to a transplant, then there's
a whole set of other risks that come into the pictures. So you know, one of the things that we've done is there are two drugs approved for loopus and those two drugs really were born out of the research that the LRA and its legacy organizations supported. We're proud of that. And there's also a drug that was recently approved a couple of years ago go for lupus nephritis that
the LRA had invested some foundational research and that also led to that. So while there's only three therapies available to 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 tested clinically. May was Lupas' Awareness Month. Im Ryan Gorman and joining me to talk more about all of this as the President and CEO of the Lupus Research Alliance, Albert t Roy. You can learn more
about the work they do and support 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 learned more and more about this disease. You know, I think the so to answer your question directly, diagnosis is very very challenging. There are people with lupus 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 categorized as a disease, I can't think of another disease where it's more sort of heterogeneous, 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 it very very challenging to diagnosed. The instruments we use, are we the clinicians used to diagnose someone with lupus are very complicated, very convoluted, And I'm talking about rheumatologists that are have learned over years, have been trained and have a focus on loopus to this day find it very very challenging to deploy some of these clinical assessments. And so we got to have better diagnostics. More importantly, we have to have better bio markers,
meaning that we have to understand someone with lupus. What are the biomarkers that are driving the disease, and can those as bile 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. Cancer has been so well sort of treated some cancers, not all because of understanding that the antigen or the bio mark and being able to drug it right. To understand and see that and see that
and predict response. That's where we need to get with lupus. It really has to become an individualized disease, a personalized medicine approach, and be able to do that. Not only do you have to diagnose them earlier to prevent damage, you also have to understand what's driving the disease, and so you have to get to the molecular genetics of the disease so you can stratify patients
based on prognosis and then match best patient for best drug. In terms of the numbers of people diagnosed with lupus, has that increased, it all decreased, remained steady? What can you tell us about that? Yeah, I think the prevalence of loopus is probably fairly static. I think we're getting 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 only highlights the
disease, but it also increases awareness. And so I think because of that, because of the attention it's getting I ought to get, there are things that are helping us diagnose it better. But I as far as you know, the prevalence of the disease, to my knowledge, and again I don'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, depending on where you read, it ranges 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's probably 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 say it's fairly static. Is your organization involved in studies on loopus? Beyond the research that we've talked about, clinical trials things like that. Yeah, So we when
we started our organization because we didn't know why people get lupus. 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 Lupus Research Alliance had invested a lot in and we still do. But over the period 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 in the clinical
space and the translational space closer to the human being. And so we established an affiliate organization in twenty eighteen called Lupus Therapeutics. They're a wholly owned affiliate of the LRA and their charge was to essentially take the learnings that the organ we supported, the basic science, the translational learnings, and to work with pharmaceutical companies and developing drugs or potential new therapies within an infrastructure of clinical trial
sites that we support throughout North America. And that apparatus or that infrastructure is called our Loopus Clinical Investigators Network are LOOSEN and this is a group of academic medical centers, fifty five of them within North America, primarily in the US.
What we do have a number of centers in Canada and they partner with our affiliate to sort of conduct clinical research and here to four, Lupis Therapeutics is involved in about twenty five percent of the active loopis clinical trials that are taking place with industry, with the biopharmaceutical industry, and that's grown and so we're really excited about that, and I think it really shows the breadth of the type of research we do from the basic science, the cellular science,
all the way through to the clinic where it's being evaluated in the context of the clinical trial. And that's really started happening since twenty eighteen and will continue to for those who either have lupus or for family members friends of those who've been diagnosed with lupus, what are some of the resources that you have available
online that they can check out to learn more about all of this. Yeah, so, you know, one of the cool things that we we did for Lupus' Awareness Month is we sort of developed a toolkit that really helps individuals who were just diagnosed. And as you can imagine, with any diagnosis of any disease, it's extremely overwhelming, as you can imagine it, and because lupas is wildly diagnosed and misunderstood. Raising this awareness is Raising awareness is critical.
So we developed a social media kit that it's on our website at this research dot org and it's really put together, I think very well. It's got ready to use tools for spreading the word on on what loopus is, where what you how you can get connected to a healthcare provider within our network.
It's on all of our social media platforms uh and we think it's a great resource and in many ways will make a big difference to those that are searching for answers and it's and there are plenty of other opportunities on our website to learn more about how you can get involved beyond just sort of where do I go to get seen? Because I think one of the biggest things ryan that we see in Loopus and sort of getting new therapies is there's really a
lack of participation that's representative of the patient population and clinical trials. And the only way that we can and get people off of prendo zone long term or some of these chemotherapeutic agents that are used Methodred's sakesox and cyclophosphamind et cetera, is to have better drugs that are tailored and the only way that happens is
if you participate in research. And I think one of the big things that we're trying to push as an organization is that while we want to support people in their journey make sure they're getting the right care, we also want to
understand what the benefits and the advantages are of participating in research. There's plenty of ways to do that with our organization, through clinical trials, but also in non interventional ways, and we hope that when you come to our website, people come to our website to learn about those ways to get engaged with us, but as well as 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 with us we have president and CEO of the Loopus Research Alliance, Albert t Roy. Albert really appreciate it taking time to come on the show and thank you so much for the great work you're doing on this disease and all the research tied to it. And it's been a pleasure. And you know, it takes a village and I hope that people that hear this and listen to it can get
involved with us and looking forward to the next time we can connect. All right, and thanks again, Albert, really appreciate it. Again. I'm Ryan Gorman here on iHeartRadio Communities and now let me bring in my next guest. We're joined by the director of No Kid Hungry Campaigns, A Laney Towns. You can learn more about the work this organization does at No Kid Hungry Dot org. Again, that's No Kid Hungry Dot Org. Elaney, thank
you so much for taking a few minutes to come on the show. And before we get to this big issue facing so many families here during the summer months when it comes to making sure children are fed across the country, let's start with an overview of how this campaign came about and your goal, the mission, the work that you do. Yeah, thank you for having me.
Nook and Hungry Campaign is committed to ending childhood hunger in America. We know it can be done, and we know that food and security shouldn't exist in this country, but unfortunately, we have one in five kids living with hunger. We work to connect dots to bring to help bring federal intrition programs to communities that need them and to support access to healthy meals and the amount of work that you have to do because of the need. It really is
incredible. And I'm assuming things like high prices and just budgets being strained these days to real driver of those in need of the services you provide. Absolutely, Unfortunately, millions and millions of families across this country are living paycheck to paycheck and when there are increases in food costs or other other challenges health, transportation, other issues that hit a family, unfortunately, meals are sometimes the
thing that they have to skip or to go without. And research shows that kids who based food and security have real health and education impacts. So it's something that we know no kids should go through and really want to make sure families have access to the resources they need. And you don't have to be really well versed in this issue to understand that. I mean, you could
just think back or just think right now. No matter what your job is or if you're in school, if you're really hungry while you're trying to work, it's going to make things that much harder. And that's what unfortunately, so many kids across the country are dealing with on a daily basis. Absolutely, absolutely, we've all experienced it, even if we have thankfully not had to face poverty or food and security, but face, yeah, what the
challenge is like. And you think about it, for a young kid sitting in school who has a headache or a tummy ache because they haven't had enough food, they can't pay attention, or worse, they're pulled out to the nurse's office. They're not getting the education and support, and also the emotional and impacts that has on a kid who is facing that or facing a fear of not having enough food for the day. So explain how you conduct this
operation, how you help prevent children across the country from being hungry. One of the big things we're really focused on right now, which is timely, is the summer, the summer meal gap. So millions of kids, thirty million kids access assistants at school so they get a school breakfast or a school lunch while they're in the school system. But of course school is breaking or already has for the summer. Summer should be a time of fun and celebration
for kids. But what we see in so many communities is what it also is is a loss and access to nutrition assistance, and we see food and security increase for KASE during the summer months. So one of the big things that we're focused on is expanding access in the summer. And there's a couple of really great programs and actually new programs that Congress just passed into law that provide support for families during the summer months. We're joined right now by a
Laney Towns, director of No Kid Hungry Campaigns. You can learn more and support all of this work at No Kid Hungry dot org. So how is this going to work for the summer. Yeah, So one really exciting new program is called Summer Ebt or in some states it's called sun Bucks, And
what it is is a grocery benefit that's been given to eligible families. If you have a school age child that qualifies, you get one hundred and twenty dollars in a card that 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 to be able to just purchase more for what their kids needs during the summer months. It's not going to be in all in all states,
this summer. It's the 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 get that program up and running so that they can offer those benefits and that families know about them. So that's one really great resource. The other are summer meals. So in many communities, schools or community organizations can offer meals at no charge to families. They can come pick up a
meal, or meals are often provided on site in rural communities. There's this new option for families to pick up multiple meals at a time. So we're working with schools and community districts to help them operate those programs and to get the word out to families. How can families take advantage of these programs? How can they participate in this if they are in need? Yeah? Absolutely,
So a couple of things. One, if you're interested in in summer meals, really encourage parents and caregivers to use our texting line so you can simply text the word food FOD or comita two three oh four, three oh four, and they're providing your zip code. You have access to what information around what summer meals are available for your kids in your community. So that's one way to access what to learn more about meals for the grocery benefit program
for you know what we call summer ABT or sunbucks. Would really encourage families to look a look up at their state what's available, or they can visit our website no kindhungry dot org slash benefits to learn about if they're eligible or if they're if their state is participating in the program this year. So what have you seen in recent when it comes to the amount of participation throughout the
country for a program like summer meals. Yeah, the reason we're really excited about these new provisions and this new law passed by Congress is that there's just been really low participation in the existing programs. So only thirteen out of one hundred kids who are receiving meal assistants in the school year are having access to summer meals. It's just really hard to reach kids during the summer without those infrastructure systems. They may be staying at home, they can't get to a
site. So we're really excited about this new opportunity to get benefits right in the hands of families and in rural communities to bring meals to families instead of requiring those kids to come to sites. Let's talk about what takes place during the school year and how that process works, the work that you do with No Kid Hungry to ensure that children across the county we have meals while they're attending school. Yeah. Absolutely, school meals are critical resource for families.
As I mentioned, thirty million kids benefit from school breakfast and school lunch. We know these programs work. What we try and do is provide technical assistance and support to schools to make sure they're reaching all of their kids. Not every child is participating in a breakfast program, even if it's available in their community, and so we work with school systems to figure out how what's the best way they can operate their programs so that kids are actually participating and consuming
the meals. So we offer technical assistants and grant funds and I'm getting the word out to make sure our families are aware of the benefits they're they're eligible for. I'm Ryan Gorman with a Laney Towns director of No Kid Hungry Campaigns. You can learn more at No Kid Hungry dot org. You also do a lot of work making sure kids have meals at home. Can you take a moment and explain how that particular program works. Yeah, SNAP is one
is a critical program. SNAP or the food Stamps program is our first line of defense against hunger in this country, and it's really important that families we are eligible know that they can get benefits and how so a lot of our work is connecting families to those resources. And like I mentioned, our website No Good, hungry dot org slash Benefits provides information if you think that you may be eligible and are looking for more details about how to enroll in the
program. I noticed you offer a number of grants to different organizations working to help feed kids across the country. Can you explain those partnerships and how that process works. Schools in 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 local school, are doing amazing work. But these are hard programs to operate and there's not
a lot of money in it and support. So what we try and do is offer the assistance needed to make sure the program is strong and make sure they can reach as many as many kids as possible. Sometimes that's helping a school district secure a bus so that they can take meals out into the community, or maybe it's providing capacity to a local hy or parks and rex so they have refrigeration and the right materials to keep food at temperature so they can
offer meals. So there's a lot of a lot of support needed to make sure that these programs can run smoothly and meet kids and families where they're at. And then we try to lend a hand in grant funds and other support so they can do that great 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 Hungry continues to help kids all across the country. There's
a couple of ways, you know. Of course, donations and support to No Kid Hungry is really helpful and broadening the reach of our program. I think the other key way is getting the word out. Food and security impacts every single community in this country. Every single county faces families that are food and secure, but it can be a sort of hidden program a problem.
There can be unfortunately some shame or stigma associated and so I think it's really important to remember that we don't always 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 in the case of Summer Meals, would really again encourage folks to get the word out about our texting service, to share that information so that if families could benefit from meals, they know where to go, and that's by texting food or Comita to three h four three oh four and making sure we can support our support, our neighbors and our community and
getting access to what they need. And there's ways for younger people to get involved and support this mission as well, right absolutely, And I think that connecting the dots to volunteer at sites and supporting the program in awareness is a really critical piece. And I also want to note there are ways that companies and small businesses chefs can get involved and help make sure that no kid goes
hungry here in the US. Yeah. Absolutely, we really believe that everybody has a strength to share and that this problem of food and security is too
great that we need everybody's hands on deck to support it. So we're really thankful for just the broad spectrum of support, like you said, from chefs to corporate partners, to to restaurants to individuals are who are lending a hand in terms of getting the word out and donating their time, their capacity, their resources, holding benefits and others to make sure we can tackle this issue.
Director of No Kid Hungry Campaigns A. Laney Towns with us. You can learn more and support the work they do again at No Kid Hungry dot org. Alaney, thanks so much for the time and the work you're doing. Of course we really appreciate it. Thanks for having me all right, and that'll do it for this edition of iHeartRadio Communities. As we wrap things up, I want to offer a big thanks to all of our guests and of course to all of you for listening. I'm your host, Ryan Gorman.
We'll talk to you again real soon.