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Community DC Ria Freydberg Marcario Blood Cancer United · Community D.C.

0:07
Speaker 1: Good morning, and welcome to another edition of Community d C.
0:10
Speaker 1: I'm your host Dennis Glasgow. This morning, we welcome back
0:12
Speaker 1: to the program Rhea Friedberg Marcario, who is the executive
0:16
Speaker 1: director for Blood Cancer United, formerly known as the LS
0:20
Speaker 1: Leukemia and Lymphoma Society, but after seventy five plus years
0:24
Speaker 1: as a nonprofit, they have a fresh rebrand and we'll
0:26
Speaker 1: talk about that along with all the different things that
0:28
Speaker 1: they do, including research advocation, how to donate and volunteer,
0:32
Speaker 1: and talk about their upcoming gala near the end of
0:35
Speaker 1: May and how you can attend. Here's my conversation with Rihea.
0:37
Speaker 1: I hope you enjoy it as much as I did.
0:39
Speaker 1: Good morning, Ria, morning Dennis, how are you great. It's
0:44
Speaker 1: so nice to have you back on Community DC to
0:47
Speaker 1: catch up, and a lot of things have happened since
0:49
Speaker 1: I last spoked with you. You've got a rebrand that
0:51
Speaker 1: I talked about in the intro, and lots of exciting
0:54
Speaker 1: things in twenty twenty six and the future when it
0:56
Speaker 1: comes to Blood Cancer United. Let's do this first, because
1:00
Speaker 1: you used to be called something else for about seventy
1:03
Speaker 1: five years. I know you had your anniversary last year,
1:05
Speaker 1: so Warren year seventy six. Let's talk about the rebrand
1:09
Speaker 1: exactly what it is and why you did it.
1:14
Speaker 2: Yes, so we you know, always with some highs and lows.
1:19
Speaker 3: I'm sure anybody who's ever been through a rebrand can
1:22
Speaker 3: can share that.
1:23
Speaker 2: But this is really exciting.
1:26
Speaker 3: So for seventy five years, we have been the Leukemia
1:29
Speaker 3: and Lymphoma Society. Actually that's not completely true. I think
1:33
Speaker 3: in the original we were the Lukinia Society. There's been
1:36
Speaker 3: a couple iterations. For all intentsive purposes, we have been
1:39
Speaker 3: Lukemia and Lamphoma Society for many, many years. You know,
1:43
Speaker 3: our organization was started from a family that was grieving
1:48
Speaker 3: the loss of their son that they lost to blood cancer.
1:51
Speaker 3: And originally the organization was started as a support group
1:55
Speaker 3: for people that would ultimately lose their children and family
1:58
Speaker 3: members to blood cancer because survival rate was around three percent.
2:03
Speaker 2: As we have evolved.
2:04
Speaker 3: And the emission and evolution of this organization and the
2:08
Speaker 3: impact that we have made on research and patient support
2:13
Speaker 3: and even now advocacy making sure people have access to
2:17
Speaker 3: better treatments, we came to the you know, for all
2:20
Speaker 3: of the amazing work that we do, our name wasn't
2:23
Speaker 3: reflective of the over one hundred plus types of blood
2:25
Speaker 3: cancers that exist in the world. And you know, I mean,
2:30
Speaker 3: I don't know how many times in my fifteen plus
2:33
Speaker 3: year career here that I've run into someone being like,
2:36
Speaker 3: I'm a multiple Malmas survivor. I never knew that you
2:39
Speaker 3: were a resource for me. And it's heartbreaking for all
2:42
Speaker 3: of us who are pounding the pavement and screaming from
2:45
Speaker 3: the rooftops that we are this incredible resource. And so
2:50
Speaker 3: it's been a long time in the making, as I'm
2:53
Speaker 3: sure you can imagine the amount of research and insight
2:57
Speaker 3: and consulting need this is all that went into this.
3:01
Speaker 3: But our name Blood Cancer United is not a new mission.
3:07
Speaker 2: It is an evolution to make sure.
3:08
Speaker 3: That we reflect all of the different types of blood
3:12
Speaker 3: cancer that were we support and the patients that we
3:15
Speaker 3: are here to serve.
3:16
Speaker 1: Well, thanks for sharing that, and for me, just as
3:18
Speaker 1: a layman, it makes perfect sense. And I know you
3:22
Speaker 1: were called something for a very long time, but I
3:25
Speaker 1: just think that it fits well. I'm sure you feel
3:27
Speaker 1: the same way along with your team and everybody else.
3:29
Speaker 1: How has it been received by all the people that
3:32
Speaker 1: you work with, whether it's the doctors and the nurses
3:35
Speaker 1: and the researchers and all the families.
3:37
Speaker 3: Yeah, Dennis Is it's so reaffirming and you know, we
3:43
Speaker 3: every look, we all have brand loyalty, and it is
3:46
Speaker 3: going to probably take even me a very long time
3:49
Speaker 3: to not think LLS or I say bo Cancer United.
3:53
Speaker 3: But we saw in the first month of the after
3:57
Speaker 3: the launch, like it was something like three hundred percent
4:00
Speaker 3: new clicks on the website outreach tour of patients and families.
4:07
Speaker 2: That we're looking for resources.
4:09
Speaker 3: You know, everyone tells you when you receive that unfortunately
4:13
Speaker 3: that horrible news that you have cancer, and if it's
4:15
Speaker 3: a blood cancer and you're not supposed to google, but
4:17
Speaker 3: everyone googles. And to have people who are in areally
4:22
Speaker 3: their darkest time immediately be able to find us and
4:25
Speaker 3: be us to be able to open our resource support
4:30
Speaker 3: all of the thing arms the amazing.
4:32
Speaker 2: Work that we do.
4:34
Speaker 3: Has truly been I mean, it's a game changer and
4:37
Speaker 3: it's so exciting.
4:38
Speaker 2: It's so exciting.
4:39
Speaker 1: Well, I would love to hear that that is wonderful
4:41
Speaker 1: news that it's been so well received. Well you're starting
4:43
Speaker 1: to talk about it already, but I'd love to ask
4:45
Speaker 1: you directly. If you were to give our listeners just
4:48
Speaker 1: basically a thirty thousand foot view about what Blood Cancer
4:52
Speaker 1: United does, what would you tell them that you do?
4:55
Speaker 3: Oh my gosh, Well, me personally, I like to say,
4:59
Speaker 3: my joke that may or may not be that funny,
5:01
Speaker 3: is that.
5:01
Speaker 2: I'm not smart enough to be a doctor. So what
5:04
Speaker 2: I can but what I can do is talks of
5:06
Speaker 2: paint off the wall.
5:07
Speaker 3: So my role is in the fundraising world, but it's
5:10
Speaker 3: to support the organization.
5:12
Speaker 2: And what we do is in three buckets. It's groundbreaking research,
5:16
Speaker 2: it is patient support.
5:18
Speaker 3: Services, and it is advocacy, which is making sure that
5:21
Speaker 3: people have access and the treatments they need are affordable.
5:24
Speaker 3: We have lobbyists on the hill that work tirelessly to
5:27
Speaker 3: do just that.
5:29
Speaker 2: And it's you know, it's one of the unfortunate.
5:33
Speaker 3: Best kept secrets is we're one of the largest research
5:36
Speaker 3: funding organizations in the entire country, not just for blood cancer,
5:39
Speaker 3: but for all cancers. And this is where I make
5:43
Speaker 3: the joke about me not being the doctor. I know
5:45
Speaker 3: just enough to be dangerous. Is blood Is it easier
5:48
Speaker 3: to test and research than solid tumors?
5:52
Speaker 2: The access is.
5:53
Speaker 3: There, so so many of these treatments that I see,
5:57
Speaker 3: I almost did it. Blood Cancer United has funded are
6:02
Speaker 3: used in the testing and treatment and are now you know,
6:05
Speaker 3: for breast and bone and pancreatic.
6:09
Speaker 2: And just so many other things.
6:11
Speaker 3: And then we have you know with you are diagnosed,
6:13
Speaker 3: like I said, whether you ill, fated Google, or we
6:17
Speaker 3: have this incredible resource or information resource center, and whether
6:21
Speaker 3: you are a patient, a family member, a caregiver, a friend,
6:24
Speaker 3: you can call and get connected within twenty four hours
6:28
Speaker 3: to master's level oncology clinicians and nurses who will walk
6:32
Speaker 3: you through what the heck does this diagnosis mean to.
6:36
Speaker 3: Here's financial, educational, or emotional support resources. I'm in need
6:41
Speaker 3: of clinical trials, here's our Clinical Trial Support Center. Like
6:44
Speaker 3: it is a one stop shop to make sure that
6:48
Speaker 3: people in their people have what they need.
6:50
Speaker 2: So anyway, it makes it a very.
6:52
Speaker 3: I'm not one of those those folks that can sell
6:54
Speaker 3: ice to a polar bear, So I gotta be really
6:56
Speaker 3: passionate about what we do, and this organization makes really easy.
7:00
Speaker 1: Well, when we have guests on the show, they have
7:02
Speaker 1: nothing but passion. When you're running a nonprofit, especially as
7:05
Speaker 1: an executive director, because usually it's a small team and
7:07
Speaker 1: we've learned that and it's tireless and lots of hours,
7:10
Speaker 1: but it pays off. You know, you had my attention
7:13
Speaker 1: of about talking about one hundred different types of blood cancers,
7:17
Speaker 1: and you and I can agree because you deal with
7:20
Speaker 1: families and researchers and doctors and nurses and clinicians all
7:24
Speaker 1: the time about what you do and blood cancers. I've
7:28
Speaker 1: had My mom has had leukemia since nineteen eighty and
7:31
Speaker 1: it's managed and she's eighty seven now, so that's encouraging.
7:34
Speaker 1: And my mother in law's had breast cancer, my dad
7:38
Speaker 1: had lung cancer, and I've got rheumatarid arthritis, so you know,
7:42
Speaker 1: but people got stuff, man. It just there's everything out there.
7:45
Speaker 1: So when it comes to the one hundred types of
7:47
Speaker 1: blood cancers, this is what I'm trying to get at RHEA.
7:50
Speaker 1: I'd love to get an education because that's an extraordinary number.
7:54
Speaker 1: And when you start to take a look at your
7:56
Speaker 1: latest data, and I promise that I won't hold you
7:58
Speaker 1: in anything. The numbers are we looking at, whether it's
8:02
Speaker 1: the DMV or domestically in the United States with people
8:05
Speaker 1: that have a type of blood cancer right now, is
8:07
Speaker 1: there some data that you can share with us.
8:10
Speaker 3: Yeah, yeah, there's I mean, the cold hard stats are
8:16
Speaker 3: in the United States alone, every three minutes someone is
8:19
Speaker 3: diagnosed with a blood cancer, and roughly about every nine
8:22
Speaker 3: minutes someone loses their battle. There's about over a million
8:25
Speaker 3: Americans that are living with or in treatment or in
8:28
Speaker 3: remission from blood cancer.
8:31
Speaker 4: And it's it's it's one of the it's one of
8:33
Speaker 4: the top five I guess, you know cancers, which is
8:38
Speaker 4: in the in the list that you never want to
8:40
Speaker 4: be on, and so, you.
8:43
Speaker 3: Know, I think it puts us in a position of
8:47
Speaker 3: we want to be able to support It's the number
8:49
Speaker 3: one cancer for kids. It's the number one pediatric cancer
8:53
Speaker 3: that is diagnosed as leukemia, and historically only four percent
8:58
Speaker 3: of research has gone towards pediatric So that is a
9:00
Speaker 3: huge piece of what we do in our Dare to
9:03
Speaker 3: Dream project, which is ensuring that research and collaboration across
9:09
Speaker 3: continents is happening for pediatrics.
9:12
Speaker 2: And you know, I mean, it is, it is truly
9:15
Speaker 2: what we do. It's it's uh. One of the one
9:19
Speaker 2: of the.
9:19
Speaker 3: Things that we always tell people we have these incredible
9:21
Speaker 3: volunteers and advocates that we would get to work with.
9:24
Speaker 3: I've got the best board of trustees in the entire
9:26
Speaker 3: universites where here.
9:28
Speaker 2: Locally, and.
9:30
Speaker 3: You know, it's it's just sharing more about who we
9:34
Speaker 3: are because there are so many just like yourself, Like
9:36
Speaker 3: there's so many folks that you would never know have
9:38
Speaker 3: been affected by this, and we where we can't. You know,
9:42
Speaker 3: we rely on our volunteers to be able to share
9:45
Speaker 3: us as.
9:45
Speaker 2: A resource because, as you kind of shared, the nonprofit
9:49
Speaker 2: world is small but mighty yea.
9:51
Speaker 3: Uh so we you know, we we'll fight tooth and
9:54
Speaker 3: nail to make sure that we can we get our
9:57
Speaker 3: our support in the hands and anybody that needs it.
10:00
Speaker 1: One of the many things that you offer up at
10:01
Speaker 1: Blood Cancerunited dot org is basically a navigation on patient
10:06
Speaker 1: types with adults, young adults, and children and teens. It
10:10
Speaker 1: really is an excellent resource. So I'm sure Ria is
10:12
Speaker 1: going to reinforce what I'm about to say because she
10:14
Speaker 1: kind of alluded that don't go to Google doctor please.
10:17
Speaker 1: I've been told so many times on any aim when
10:18
Speaker 1: I have please don't go to Google MD. It's just
10:21
Speaker 1: going to scare you. But if you go to the
10:23
Speaker 1: right source, it's really incredible. But I imagine also as I
10:27
Speaker 1: was looking at your website getting ready for our interview,
10:29
Speaker 1: Rea that because research and cancers and everything is so
10:34
Speaker 1: fluid with exciting things happening, but then more cancer is
10:37
Speaker 1: being added on, probably on a yearly basis, and now
10:40
Speaker 1: there's over one hundred that you mentioned. I imagine that
10:43
Speaker 1: you and your team have to stay up to date
10:45
Speaker 1: on just everything that's going on. And my point is
10:48
Speaker 1: it might be a little bit overwhelming at times because
10:50
Speaker 1: there is so much information about it.
10:53
Speaker 3: Yeah, no, and it is, and also you know it is.
10:58
Speaker 3: As much as it's overwhelming, then the amount of blood
11:02
Speaker 3: cancers and and different nuances and all of the things
11:06
Speaker 3: that go with that. There's also what there's also a
11:10
Speaker 3: lot of lot to celebrate in the breakthroughs, and I
11:12
Speaker 3: think that's where in the old like that, if I
11:16
Speaker 3: tell the first thing I have every single member of
11:19
Speaker 3: our team and our staff has saved in their phone
11:22
Speaker 3: the which I was referenced before, but our information resource center,
11:27
Speaker 3: that's the place to.
11:27
Speaker 2: Go because you can even you know you can, and
11:30
Speaker 2: you can get to it on our website. It's it's
11:33
Speaker 2: talking to a person who is going to walk you through.
11:37
Speaker 3: What to do, how to like, and what your next
11:39
Speaker 3: steps are and be that voice on the line that's
11:42
Speaker 3: going to help navigate the onslaught of the information that
11:45
Speaker 3: you're getting from doctors and nurses and family members that
11:49
Speaker 3: are like I googled it, there's a clinical trial in
11:51
Speaker 3: Australia that you should like. There's so much and everybody
11:54
Speaker 3: wants to do good, but this is the place.
11:57
Speaker 2: And I think of it as like just like a
11:59
Speaker 2: little like a little.
12:00
Speaker 3: Zen garden that you can go to to get in
12:03
Speaker 3: such a challenging time to be able to get one
12:06
Speaker 3: person to say, Okay, here you go. Yeah, we're going
12:08
Speaker 3: to walk you through this. We're going to stay with
12:10
Speaker 3: you throughout your entire whether it's you, your family member,
12:13
Speaker 3: your entire treatment journey. And then survivors should be on
12:16
Speaker 3: because that's also a piece that I think often.
12:19
Speaker 2: Gets overlooked of.
12:20
Speaker 3: You know, we celebrate, as we should someone ringing the
12:23
Speaker 3: bell and they're done with their treatment, but what happens
12:25
Speaker 3: after Yeah, and often there's side effects.
12:28
Speaker 2: There is emotional toll that this takes on all members
12:32
Speaker 2: of the family, and so we are really.
12:35
Speaker 3: Committed to making sure that we stay with that those
12:37
Speaker 3: those people not only just to survive cancer, but to
12:40
Speaker 3: thrive in their.
12:41
Speaker 2: Life being well.
12:42
Speaker 1: I love that you do that. And also there's a
12:44
Speaker 1: pipeline too, and we'll reiterate this at the end of
12:46
Speaker 1: our conversation with Rhea, but you can talk to an
12:48
Speaker 1: information specialist at one eight hundred nine five five four
12:52
Speaker 1: five seventy two Monday through Friday, nine to nine p Eastern.
12:57
Speaker 1: That's exciting and just a moment. I want to talk
12:59
Speaker 1: to you about donation and funding and also volunteering because
13:02
Speaker 1: those are very important. But that leaves me to talk
13:04
Speaker 1: about research because I was looking at your overview and
13:07
Speaker 1: it's who we fund research that we fund, impact on
13:11
Speaker 1: research programs and research grand programs. I know there's several
13:16
Speaker 1: buckets there, but can you talk a little bit about that,
13:18
Speaker 1: about what the latest is and how that research overview works.
13:23
Speaker 2: Well, and let me be Claire Dennis. I'm a fundraiser
13:26
Speaker 2: or not. No, I'm just kidding now.
13:29
Speaker 3: Our research is, I mean, we have an incredible mission
13:34
Speaker 3: team that led by our Chief Medical Officer, doctor Gwen Nichols,
13:38
Speaker 3: who like she's like my Michael Jordan, like she's truly incredible.
13:42
Speaker 2: They look for the best of the best.
13:44
Speaker 3: We have so many different pieces of that We have
13:47
Speaker 3: our Therapy Acceleration Program, which is in collaboration with pharmaceutical
13:52
Speaker 3: partners to get promising drugs to market in half of
13:56
Speaker 3: the time that it would normally take for FDA approval.
13:59
Speaker 3: We also have partnerships with every major institution hospital cancer.
14:07
Speaker 3: We look for the best of the brightest, and in addition,
14:09
Speaker 3: we also have impact grants that are supporting those upcoming researchers.
14:14
Speaker 3: And you know, we are not federally funded, so we
14:19
Speaker 3: are really doubling down to make sure that organizations that
14:24
Speaker 3: are doing good work can continue to do good work.
14:27
Speaker 3: And so we have gap we call bridge gap funding
14:32
Speaker 3: to make sure that these labs can stay open if
14:35
Speaker 3: they're and that we aren't going to miss any sort
14:38
Speaker 3: of delay in getting the right treatment in the right
14:41
Speaker 3: person's hands.
14:42
Speaker 1: I appreciate your transparency because a lot of people would
14:44
Speaker 1: think that an organization that's been around a nonprofit for
14:47
Speaker 1: seventy five plus years would be federally funded, but you're not.
14:50
Speaker 1: Now with that said, there are easy ways to donate.
14:53
Speaker 1: And one of the cool things that I love about
14:55
Speaker 1: your organization and a lot of the other nonprofits that
14:58
Speaker 1: we talk to, it's not just one way to give,
15:00
Speaker 1: which I think is cool. I mean there are many
15:03
Speaker 1: that I don't know if we need to go over
15:04
Speaker 1: all the I'm just scrolling on the website now. There
15:06
Speaker 1: is workplace giving and there's also just a ton of
15:09
Speaker 1: ways to give. Can you go through some of them
15:10
Speaker 1: for everybody?
15:12
Speaker 3: Yes, I will keep this brief because I what I
15:15
Speaker 3: what I love about what we do is that we
15:17
Speaker 3: have something for everyone. Yeah, so whether it's you know,
15:20
Speaker 3: whether someone raises wants to raise a dollar or wants
15:24
Speaker 3: to raise one hundred million dollars, whether someone wants to
15:27
Speaker 3: donate their time in speaking with at like lawmakers or
15:31
Speaker 3: boots on the ground to help us ensure our events
15:33
Speaker 3: are run successful, corporate partners, individual we have something for everyone.
15:39
Speaker 2: We have different campaigns.
15:41
Speaker 3: We have walks, we have galas, we have cycle events,
15:47
Speaker 3: we have marathons. Truly, there is something for everyone, and
15:52
Speaker 3: I would just encourage those that are interested to go
15:55
Speaker 3: to the website, which I'm sure we'll repeat a thousand times.
15:58
Speaker 3: And this is also what I want to do here
16:00
Speaker 3: done us at Blood Cancerunited dot org. There we have
16:03
Speaker 3: twenty seven regions around the country. I happen to be
16:06
Speaker 3: in the mid Atlantic, but staff contacts are on there,
16:09
Speaker 3: reach out and are we are armed and ready to
16:14
Speaker 3: understand a little bit about what you want to get
16:15
Speaker 3: out of a partnership with us, what you need, what
16:17
Speaker 3: you want, and help you find them right fit.
16:20
Speaker 1: Well, thanks for all that, and I'll expound a little
16:22
Speaker 1: bit on what Rio was talking about ways to give,
16:25
Speaker 1: and once again you can go to the website to
16:26
Speaker 1: check this out. But workplace giving, you've got employee matching gifts,
16:31
Speaker 1: payroll giving, volunteer grants. So if you're a small, medium
16:34
Speaker 1: or larger business and there's somebody there where blood cancers
16:37
Speaker 1: affected them, or maybe you that runs the business, you
16:40
Speaker 1: can do this as a business, which is really cool.
16:42
Speaker 1: And then personally, there are donor advice funds, there's honor
16:46
Speaker 1: and memorial gifts. There's monthly giving, there's a one time gift.
16:49
Speaker 1: Of course you can do two on donation that big
16:51
Speaker 1: red button on the top right end corn there's cryptocurrencies,
16:54
Speaker 1: there's stock gifts and real estate gifts. And that's my
16:57
Speaker 1: point was you've given everybody so many different pipelines to give.
17:00
Speaker 1: I just love that you've done that. So I appreciate
17:02
Speaker 1: that you did mention volunteering and people say, well, how
17:06
Speaker 1: on Earth do I volunteer for an organization like this?
17:08
Speaker 2: How do they?
17:12
Speaker 3: As I said before, I mean reach out to your
17:15
Speaker 3: local through the website, you can reach out to your
17:18
Speaker 3: local organization.
17:19
Speaker 2: You can, there are way you know you can email.
17:23
Speaker 2: Contacts are all there.
17:24
Speaker 3: It's very easy to work with and we have volunteering
17:28
Speaker 3: opportunities for everyone, whether it's you know, supporting at an event,
17:34
Speaker 3: it is working with you know, our patient and community
17:37
Speaker 3: outreach program providing help for patients.
17:40
Speaker 2: We have all of them. There's a ton of.
17:42
Speaker 3: Different opportunities, and I think actually one of my favorite
17:46
Speaker 3: volunteer opportunities for those that have been affected directly by
17:49
Speaker 3: blood cancer is our First Connection program and as I
17:53
Speaker 3: alluded to, kind.
17:54
Speaker 2: Of our education and educational and also emotional support services,
17:58
Speaker 2: this is available.
18:00
Speaker 3: These are trained volunteers who have been diagnosed with a
18:04
Speaker 3: similar blood cancer at a similar age that we've matched
18:08
Speaker 3: demographics and so that you kind of have like a
18:11
Speaker 3: peer support of somebody who has lived this life, who
18:15
Speaker 3: knows what you're going through and is able to actually
18:18
Speaker 3: be that kind of support, whether it's for the caregiver,
18:22
Speaker 3: it's for.
18:22
Speaker 2: The spouse, the child, any of the above. Or for
18:25
Speaker 2: the person that's going through it.
18:26
Speaker 3: So it's truly, you know, it's a remarkable resource because
18:31
Speaker 3: no one knows the ends and the outs unless you've
18:33
Speaker 3: really been through this.
18:34
Speaker 1: I probably told you this before, but I want to reiterate.
18:37
Speaker 1: I love that you do that. And here's why. Everybody
18:40
Speaker 1: on this program that listens pretty regularly knows that I
18:43
Speaker 1: have are a rheumatorid arthritis and I got in eighty seven,
18:45
Speaker 1: just out of college when I was twenty one, And
18:48
Speaker 1: the reason why it was horrifying, beside being a very
18:50
Speaker 1: painful disease, folks, and a blood disorder that I have,
18:54
Speaker 1: is that the medications were awful. There was no Internet,
18:57
Speaker 1: there was no education, and I basically like I was
19:00
Speaker 1: the only person on the planet that had it. So
19:02
Speaker 1: there was no twenty four to seven hotline for me.
19:05
Speaker 1: There were another patients to talk to me. I just
19:06
Speaker 1: got distributed really bad drugs and that was the end
19:09
Speaker 1: of it. It was brutal, it was medieval, and that's
19:11
Speaker 1: eighty seven, right, Okay. I'm not saying that for anybody
19:14
Speaker 1: to feel sorry for me. When I'm trying to explain
19:16
Speaker 1: to you, is that moving forward now with rhea and
19:19
Speaker 1: the other organizations we talked to, having somebody to talk
19:23
Speaker 1: to, to relate to that you're not the only person on
19:27
Speaker 1: the planet going through this, and you can be able
19:29
Speaker 1: to show your story, even if it's brutal, of what
19:32
Speaker 1: you're going through. And that's why I love that you
19:34
Speaker 1: do that, because as human beings, I think we need
19:37
Speaker 1: a couple things beside love. We need simple acknowledgment, but
19:40
Speaker 1: also we need to be able to relate Rhea, and
19:43
Speaker 1: I'm sure everybody that experiences what you just talked about
19:47
Speaker 1: and talking with somebody where they've gone through a similar
19:50
Speaker 1: process is just got to be a godsend to people
19:53
Speaker 1: that they're able to do that. I love that you
19:54
Speaker 1: do it.
19:56
Speaker 2: Yeah, well, I mean, and I'm a product of this.
19:59
Speaker 3: You know, not ever one that works at the organization
20:01
Speaker 3: has a direct mission connection, albeit it takes you about
20:04
Speaker 3: two minutes before you get really really connected. But you know,
20:07
Speaker 3: I lost my mother to leukemia back in two thousand
20:09
Speaker 3: and three, and I was a volunteer for this organization
20:13
Speaker 3: for years and did our one of our campaigns as
20:16
Speaker 3: our Visionaries of the Year campaign, which is going on
20:19
Speaker 3: right now, and it was inspiring. It was inspirational it
20:24
Speaker 3: was an opportunity for me to share my mother's story,
20:27
Speaker 3: what I went through with people who had also been
20:30
Speaker 3: through something similar, and I mean, I'm in an extreme.
20:34
Speaker 3: It was so cathartic that I changed careers completely and
20:36
Speaker 3: have been working here ever since. So there is there's
20:39
Speaker 3: a lot to be said for, you know, just finding
20:42
Speaker 3: your community and finding your people. But it's it's what
20:45
Speaker 3: we you know, it's what we do. We have such
20:48
Speaker 3: an incredible I like to say, Arsenal community, family, what how, whatever,
20:54
Speaker 3: whatever resonates with you, we're here to support and you know,
20:58
Speaker 3: and also like from the financial and we're also really transparent.
21:01
Speaker 3: I mean, eighty sons of every dollar goes back to
21:03
Speaker 3: the mission. We want to shout that from the rooftops.
21:05
Speaker 3: We want people to know exactly what percentages are going where.
21:09
Speaker 3: Please don't ask me for those because I do not
21:11
Speaker 3: have them right in front of me, but I can
21:12
Speaker 3: absolutely get them for you, Dennis. But we want people
21:16
Speaker 3: you know, we pride ourselves on transparency. We're here to
21:19
Speaker 3: support and we are not trying to you know, pull
21:22
Speaker 3: the wool over anybody.
21:22
Speaker 2: Guys.
21:23
Speaker 1: Well, very cool. Off the top of our conversation, you
21:26
Speaker 1: talked a little bit about advocation. I know that's not
21:29
Speaker 1: in your purview because you know you're fundraising and stuff,
21:31
Speaker 1: but I imagine you hear about the advocacy that's going on,
21:34
Speaker 1: whether it's Capitol Hill with the lobbyist and your CEO
21:38
Speaker 1: and other doctors that are on the board of directors.
21:41
Speaker 1: What does it look like? What are you hearing about advocation?
21:44
Speaker 1: And before you answer that, I'm not a dummy, and
21:48
Speaker 1: none of our listeners are. We know that the more
21:50
Speaker 1: people that have a certain disease, the more usually gets
21:52
Speaker 1: funded because it's affecting millions and not just maybe thousands
21:56
Speaker 1: or hundreds of thousands. And I hate that. That's kind
21:59
Speaker 1: of the way the world is work working right now.
22:00
Speaker 1: So if a lot of people have something, you can
22:02
Speaker 1: guarantee that probably medications will be very expensive, but they'll
22:06
Speaker 1: be accessible and things will be funded through certain nonprofits.
22:11
Speaker 1: With that said, when it comes to advocation, what's it
22:14
Speaker 1: looking like right now? What are you hearing out there
22:16
Speaker 1: about advocacy when it comes to blood cancers?
22:20
Speaker 3: Yeah, I mean, you know, it's It's also one of
22:24
Speaker 3: the interesting is there's such a partnership between all of
22:27
Speaker 3: the healthcare organizations and specifically cancer organizations that are working.
22:33
Speaker 2: And you know, we again we are.
22:36
Speaker 3: A non partisan organization, but there have been some substantial
22:39
Speaker 3: cuts to you know, healthcare funding and research, and.
22:43
Speaker 2: So we have you know, the advocacy side.
22:46
Speaker 3: We have an office of Public Policy, and we rely
22:50
Speaker 3: on the constituents around the country to make calls.
22:54
Speaker 2: It's the easiest and.
22:56
Speaker 3: I think we've all gotten especially given election years, we
22:59
Speaker 3: all get an onslow lot of political But you can join.
23:02
Speaker 3: You can join to be an advocate, and it is
23:05
Speaker 3: as easy as two clicks to be able to share
23:08
Speaker 3: your your message and support.
23:09
Speaker 2: And we've had some really we've had some hits, but
23:13
Speaker 2: we've also had some great wins.
23:14
Speaker 3: I mean, just recently we got across because we're here,
23:18
Speaker 3: I'm here locally in the DMV and Governor Spamberger signed
23:22
Speaker 3: our out of pocket bill which puts a cap on
23:27
Speaker 3: it puts a cap on healthcare insurance out of pocket expenses.
23:32
Speaker 2: For folks, and it is like it's truly groundbreaking. I mean,
23:37
Speaker 2: we we.
23:37
Speaker 3: See, we have the facts to say that if folks
23:41
Speaker 3: don't have the resources, if their treatment costs exceeds twenty
23:45
Speaker 3: five hundred dollars, there is I think it's something ridiculous
23:50
Speaker 3: like a sixty to seventy percent chance that they won't
23:52
Speaker 3: continue treatment, and so we have to do everything that
23:56
Speaker 3: we can to.
23:58
Speaker 2: Be able to do that. I mean, medical debt is
23:59
Speaker 2: a real thing, and I mean another thing.
24:02
Speaker 3: We have a whole medical debt relief support program that
24:07
Speaker 3: actually helps navigate how to other resources, not necessarily even
24:12
Speaker 3: within the our organization, but outside, because it is like,
24:17
Speaker 3: not only are you trying to survive cancer, you're also
24:19
Speaker 3: trying to figure out how to pay for the life
24:22
Speaker 3: saving treatment and that is an incredibly impossible ask of
24:28
Speaker 3: do I pay my bills or do I keep myself alive?
24:32
Speaker 2: And we never want someone to be in that situation.
24:34
Speaker 1: Yeah, those are really staggering numbers and data. I did
24:39
Speaker 1: want to talk to you before we wrap up here.
24:40
Speaker 1: We have about five minutes left about the future, and
24:43
Speaker 1: I know with you everything is very fluid and we're
24:46
Speaker 1: moving forward in twenty twenty six. But as we have
24:49
Speaker 1: events coming up and your different fundraisers and the research continuing,
24:53
Speaker 1: anything that you're really excited about or you want to
24:56
Speaker 1: spotlight or get on our radar with our listeners that
24:58
Speaker 1: is coming up soon or in the future that you
25:01
Speaker 1: are getting, you know, super jacked up about I'm.
25:05
Speaker 3: I'm excited about so many things, but the you know,
25:07
Speaker 3: we're we're about to hit the end of our Galas season.
25:11
Speaker 3: But on May thirtieth, we have the thirty ninth Leukemia Ball,
25:15
Speaker 3: which will be held.
25:16
Speaker 2: At the Washington Convention Center in Washington, d C.
25:20
Speaker 3: Headlining Comedian with Vanessa Bayer, who is actually a pediatric
25:23
Speaker 3: leukemia survivor.
25:25
Speaker 2: I am a huge Saturday.
25:27
Speaker 3: Night live nerd, so I will have to put my
25:29
Speaker 3: most professional face on for this.
25:31
Speaker 2: But it is an incredible evening with.
25:34
Speaker 3: Fifteen hundred of our closest friends at the convention Center,
25:38
Speaker 3: a mission program, dinner, dancing, obviously comedian. It is truly
25:45
Speaker 3: and I should also note the largest silent option in
25:48
Speaker 3: the DMV.
25:49
Speaker 2: It's now and so anyway, I'm I'm.
25:52
Speaker 3: Very excited about that, and I am and for anybody
25:56
Speaker 3: that's interested Leukemia Ball dot org tickets are still available,
26:00
Speaker 3: love to have you there. But it is, it is truly,
26:02
Speaker 3: it's one of the most spectacular parties. I think it's
26:05
Speaker 3: the largest non political black tie fundraiser in DC.
26:09
Speaker 1: That's huge. I'm also a big Vanessa Bear fan and
26:12
Speaker 1: she was very funny in SNL all those years and
26:14
Speaker 1: she still continues to do great work and that's a
26:17
Speaker 1: nice get and you know, I guess in those situations
26:20
Speaker 1: too that and this is a great example. I imagine she
26:23
Speaker 1: probably has some connection to blood cancer. And you know,
26:27
Speaker 1: I think we're you're probably running into people all the
26:29
Speaker 1: time for what you do. And this goes back to
26:33
Speaker 1: you know, talking about what's happened in my immediate family.
26:35
Speaker 1: Of so many people that are touched by this, it's
26:37
Speaker 1: everybody basically.
26:40
Speaker 2: Yeah, it is.
26:41
Speaker 3: And that's really it's a focus for us, especially when
26:44
Speaker 3: we're dealing I mean, hey, who doesn't love a celebrity, comedian,
26:47
Speaker 3: celebrity anything at events. But when you get we are
26:51
Speaker 3: able to get connected with incredibly passionate people like Vanessa
26:54
Speaker 3: who had pediatric.
26:56
Speaker 2: Leukemia and is very and is like I mean, she's
26:59
Speaker 2: made a huge country ocean. She is doing this out
27:01
Speaker 2: of the goodness of her heart. Like it is really exciting.
27:04
Speaker 3: And it also changes that it changes the feeling in
27:07
Speaker 3: that room when everybody up on the stage, everybody in
27:11
Speaker 3: that room is there for a common mission. And so
27:14
Speaker 3: you know, in a world in the DC world of
27:18
Speaker 3: you know, rubber chicken dinners and black tie fundraisers and
27:21
Speaker 3: all of.
27:22
Speaker 2: This it makes it this one is extra special.
27:25
Speaker 3: Not that I'm biased against the other black tie gallaus,
27:28
Speaker 3: but this one is pretty pretty fantastic.
27:30
Speaker 1: And let's clarify, I can guarantee you that on the
27:32
Speaker 1: gall Of night that the Blood Cancer United Group is
27:35
Speaker 1: not going to be having rubber chicken for dinner that night.
27:38
Speaker 2: Oh absolutely not. We have quite we have quite the
27:42
Speaker 2: menu plan that I can guarantee you.
27:44
Speaker 1: I bet you do. It sounds like a really wonderful
27:46
Speaker 1: night and I'm very happy for you guys. Well, listen,
27:48
Speaker 1: we only have a couple of minutes left. I just
27:50
Speaker 1: want to get some final thoughts from you. We're going
27:52
Speaker 1: to give the website one more time. We can also
27:54
Speaker 1: give that phone number if you want to call and
27:55
Speaker 1: talk to somebody, and we hope you make a donation
27:58
Speaker 1: if you have an opportunity to do that, and if
28:00
Speaker 1: you want to be partners too, as a small, medium
28:02
Speaker 1: or larger business and some type of blood cancer has
28:05
Speaker 1: affected you a coworker, friend, a family member, we'd love
28:09
Speaker 1: to have you aboard. So let's just get some final
28:12
Speaker 1: thoughts from you. Ria. The floor is yours.
28:15
Speaker 3: Oh, thank you, And I as I'm not I'm a
28:18
Speaker 3: very verbose person, but no cheerpoint, Dennis. I mean, we
28:21
Speaker 3: pride ourselves on white glove service. We know that there
28:23
Speaker 3: are so many incredible organizations out there and anyone that
28:26
Speaker 3: dedicates their time to us, corporate, partner, individual, family, we
28:32
Speaker 3: want to make sure that we provide the best experience
28:35
Speaker 3: and I can say with the utmost confidence that our team,
28:38
Speaker 3: our organization is will do that. We wanted to be
28:41
Speaker 3: the right fit. We wanted to be mutually beneficial. I
28:44
Speaker 3: want people to have a lot of fun, so by
28:47
Speaker 3: all means, we would absolutely love to have folks involved.
28:50
Speaker 3: Please reach out to us blood Cancer United dot org
28:54
Speaker 3: if nothing else.
28:54
Speaker 2: Our new name is also easier, true style, so you're welcome.
28:59
Speaker 1: It sure is. That was the first thing I said
29:01
Speaker 1: to myself.
29:02
Speaker 2: This will be easier, exactly exactly. We don't have to
29:07
Speaker 2: try and spell it out of our time. No, but
29:09
Speaker 2: we're here to help.
29:11
Speaker 3: Our number one goal is making sure that every patient
29:13
Speaker 3: and family that unfortunately is affected by blood cancer knows
29:17
Speaker 3: that we exist and those that want to have some
29:19
Speaker 3: fun with us, we've got it.
29:21
Speaker 1: And it's on the website. And I love that you
29:24
Speaker 1: have this kind of little credo. It says we're all
29:26
Speaker 1: about blood cancer, so people with blood cancer. It can
29:28
Speaker 1: be about everything else, and when it comes to something
29:32
Speaker 1: so serious, I think that's a good motto and a
29:34
Speaker 1: mission to have with everybody. Listen, thank you so much
29:36
Speaker 1: for your time. I really appreciate it. I know how
29:38
Speaker 1: busy you and your team are. Please give my best everything.
29:41
Speaker 1: I know the gala is going to be a huge success,
29:43
Speaker 1: and I've heard about it that it's absolutely amazing, so
29:46
Speaker 1: and I bet it gets bigger and better every year.
29:49
Speaker 1: So thank you so much. We appreciate it. We're going
29:51
Speaker 1: to feature you always on Community DC because you're good
29:54
Speaker 1: partners with iHeart. We love to do that with you.
29:56
Speaker 1: So Rio once again, thank you so much.
29:59
Speaker 2: Thank you Jennis of a great rest of your day.