July 3, 2024 • 44 mins
Join hosts Bret and Amanda Brummitt on this heartwarming episode of Generous Impact, featuring Brian Allison from NMDP (formerly National Marrow Donor Program) and inspiring transplant recipient, Briana Donis. Discover how NMDP saves lives through cell therapy, and listen to Bri's incredible journey of survival and her unwavering gratitude for her donors. This episode is a powerful reminder of the life-changing impact of marrow and stem cell donation.
Brian shares the mission and operations of NMDP, including the challenges and triumphs of matching donors with patients in need. Bri recounts her personal story, from diagnosis to recovery, highlighting the critical importance of donor registries. Learn how you can get involved, whether by registering as a donor or supporting the cause through various volunteer opportunities.
Be inspired by Bri’s resilience and Brian’s dedication, and find out how you can make a difference in someone's life. Visit Be The Match to learn more and get involved.
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
(00:00):
Welcome to Generous Impact. This is Brett Brummett. And this is Amanda Brummett.
We are joined today by Brian Allison from NMDP, formerly known as the National
Marrow Donor Program, and Brianna Donis, a recipient.
In this episode, you'll hear how NMDP saves lives through cell therapy,
and then you'll get to hear Bree's amazing story of being one of those that was saved.
(00:24):
Well, Brian and Bree, thank you so much Thank you so much for both being here today.
I would love it if you could just start by each telling us who you are,
both personally and professionally.
Ladies first. Oh, ladies first. Okay.
So my name is Brianna Donis. I am a 28-year-old woman.
I personally am an individual just living my life day-to-day in the most meaningful
(00:53):
way possible. responsible, truly trying to be present all the time.
Each day I'm a new person. So that's kind of just how I go with life.
And professionally, I'm working as a HR project admin in the energy sector.
And I also have my own small business on an Etsy shop.
(01:16):
So I design t-shirts creatively creatively, wherever I can express myself.
I'm just a very happy individual. I truly feel like that's where my light is.
So I feel blessed to be able to find a way to share that with the world.
That's who I am so far. Beautiful.
And you're going to get to hear more about Brie's story in a little bit and
(01:37):
maybe why you have such an amazing outlook on life.
Brian, how about you? Yeah. So my name is Brian Allison.
I am a dad, a granddad, a drummer, a fishing and off-road enthusiast.
Professionally, I am the account manager for NMDP in Southeast Texas.
(01:58):
August will be 11 years with this organization doing what I do.
So I always tell people they're going to have to run me off. I love what I do.
That's awesome. I feel like I've found so many drummers lately,
just this weekend, we had a realization that on my 40 to 50 year old,
old man, baseball team, five people own drum sets.
(02:20):
So I'm just going to ask what brand of drums do you own?
Currently Yamaha. Okay. There
we go. Just had to find out. It seems like a weird serendipitous of life.
I've been a big Mapex fan for years and within the last year thought I would
try something different. So.
Right up to Yamaha. Yeah. Well, let's get on the professional side, Brian.
(02:45):
And I want to see if you can, I know you can, but would you mind telling us
a little more about what NMDP does?
And I'll just point out real fast that you guys were formerly known as the National
Miro Donor Program and Be The Match.
Yeah, absolutely. So let's start off, if you don't mind, let's talk about this
name change. because it has taken a little bit of getting used to.
(03:10):
When our organization was started, it was the National Marrow Donor Program.
So hospitals shortened that, and they've called us NMDP for years.
I guess around 12 years ago for our public-facing, our recruitment department,
we adopted the name Be The Match because we wanted something kind of catchy.
(03:33):
But that we learned over the
years has created some confusion we had
all kinds of people that thought we were a dating service we're
not we do hook you up with the most awesome date you can find but not quite
the romantic thing you know college students would often think okay these guys
(03:53):
are setting up on our college campus they thought we were trying to hook them
up with an internship or match them up to a job.
So it kind of created some confusion, even with our patients,
because we would talk to these patients and say, Hey, you know, be the match.
We would like to work with you to share your story.
And these patients would say, well, that's great. But my doctor is not searching,
(04:16):
be the match. My doctor is searching NMDP.
So the hospitals really never ever quit calling us NMDP.
And, you know, to make it simple, less confusing, you know, we kind of went
back to our roots, so to speak.
The hospitals call us NMDP, so we are now all under the NMDP umbrella.
(04:38):
What our organization does, we work with patients who have been diagnosed with
some type of blood illness.
A lot of those are leukemia, lymphoma, sickle cell, and aplastic anemia.
Those are probably the most four common, but there are about 76 illnesses that
are curable with a stem cell or marrow transplant.
(05:00):
The problem is when someone is told you have to have this transplant for survival,
70% of those patients don't have a donor in their family.
They are relying on a stranger to cure them or to save their life.
That's where we come in. We are out in your community every day,
everywhere in the United States.
(05:22):
We are advocating for those patients, raising awareness of the need for donors.
We're educating people on if you were a match for a patient,
this is what your donation would look like because there are a lot of misconceptions
and misinformation about stem cell and particularly marrow donation.
So we're educating people and those people that want to step up and help our community,
(05:47):
we help them get into the national registry that hospitals not only in the United
States, but globally are relying on to help find those unrelated donors from the United States.
So that's kind of what we do. It's a lot of community health education.
And then I know you said there's a lot of confusion around stem cells versus bone marrow.
(06:11):
Has that gotten better or is it still just very confusing for the public?
There are still a lot of misinformation out there.
The biggest thing when people hear bone marrow donation, they automatically think huge needle.
They think somebody is going to drill into me. It's got to be super painful.
(06:32):
That is the biggest thing that we battle to overcome.
What we want most people to know is 90% of our donors now are asked for stem cell donation.
Stem cell is actually the more common, and it's actually collected through an
IV in your arm, similar to plasma or platelet donation.
You know, does it hurt? It's a simple needle stick. You know,
(06:54):
it's not super painful, but it's, you know, it's like a prick, nothing major.
And for those that the 10% of our donors that do marrow, marrow is actually
collected under general anesthesia.
The donor's asleep while they collect it.
When you wake up, those muscles, they collect right above your butt.
(07:15):
Those muscles are a little bit irritated. Just like if you had a COVID shot,
flu shot, you know, your arm was sore for a day or two.
It didn't keep you from going about your daily routine.
Same thing with marrow donation. inflammation you're going
to know that you did something but it's not
going to be excruciating where you can't go
(07:35):
on with life you know so often i hear our
donors say oh i feel like i did squats or
i feel like i did heavy leg day you know our
donors from up north something we we're
not familiar with here in texas but our donors up north often say oh i feel
like i fell ice skating you know so it's not a big painful thing like most people
(07:56):
think it is and that's It's the biggest reason people are hesitant to sign up
because they think it's going to hurt and it doesn't.
Well, I mean, and I'll have a soreness or a pain for no good reason.
Please let it be because I'm actually saving someone's life.
That would be great. I'm 45 years old. I hurt myself getting out of bed sometimes in the morning.
(08:18):
That's just part of getting older.
But yeah, I'm like you. I'm like a little bit of discomfort giving somebody a second chance at life.
That is a totally worth it tradeoff. Absolutely.
Well, so Brian and Bree, Brett and I both work in the health care space and
neither of us even knew about NMDP until Cheyenne, Bree's sister,
(08:44):
shared her story in the organization with me.
I'm an organ donor. I've done all the registry and all the stuff for that.
Never even knew I needed to sign up to be a bone marrow donor.
So I'm so glad that, Brian, that you dove in with the ask right up there.
We want everybody to go sign up to be a donor.
(09:05):
So Cheyenne, Bree's sister, brought me to NMDP, but I want to know what brought
you guys to it. And Brian, I'll let you go first.
And then Bree, tell us how you found the organization. conversation?
Oh, mine is kind of a loaded question. So people hear my background and they
wonder how in the world did you end up here?
So I started off life working in public safety.
(09:28):
I was a paramedic and a police officer.
When I was going through the police academy, one of my co-workers,
his daughter was born premature and needed blood at birth.
And I was that guy that was terrified to donate.
And when I say terrified, I am the guy that I don't do needles, just no.
(09:48):
So unfortunately, the day after my friend, his daughter was born premature and
needed blood at birth, the next day at our police academy, here rolls up the blood bus.
And I couldn't be the only cadet that didn't give for his friend's daughter.
So I got on that bus and donated. Guess what? I didn't pass out.
(10:11):
I didn't get sick. It didn't hurt.
But I got to see the good that it did.
Fast forward about 10 years or so, I needed a career change,
had no idea what I was going to do.
Went back to school and got a degree in marketing and was actually donating blood.
(10:31):
And the phlebotomist was kind of picking at me. He said, so what are you going
to do with this new fancy degree that you have?
And I joked and I said, I guess be unemployed.
And he said, well, you know, you're passionate about donating.
You should consider applying we're hiring somebody
here for the blood center and that's how I got started was
(10:51):
initially as a blood donor recruiter and
we had the marrow program within our blood
center and and I fell in love with the program the biggest thing that drew me
to it over the blood side of operations was the fact that they got to work with
patients and I really love patient I loved that about being a paramedic, getting to help people.
(11:17):
As a representative for NMDP, I still, I get to do the same thing.
You know, imagine hearing your name or your mom's name or your kid's name followed
by a diagnosis and a defined amount of time to live,
unless you can find this stranger that's willing to help.
(11:40):
That's where I come into these people's lives. And I get to say,
hey, I'm this crazy bald guy that's willing to go just about anywhere to share
your story and help you find this stranger that's going to save your life.
And I get to give them back that little bit of hope.
And that's what I love about what I do.
(12:02):
That is incredible. All right, Bree. I know you didn't go searching for NMDP.
So how did you end up finding them?
So I had been diagnosed with severe aplastic anemia, and it was part of my options for treatment.
It was, I think, the second or third option. The first option they really want
(12:23):
to go with is a related donor.
They tested my family. No one was a match. No one was a partial match.
So they said, okay, well, let's go to the registry and see if you have any matches
there. And Be The Match was who they went to, the donor program they went through.
And they were pretty close by each other, the hospital and the regional Gulf
(12:48):
Houston blood hospital.
Place building where everything's at. So they reached out to them and I had so many, so many donors.
So I got in contact with, I guess, whoever was representing me.
And we just started our journey from there with my medical team.
And the relationship grew. It wasn't just a hospital medical team.
(13:12):
Be The Match really got to know me as an individual.
We did a lot of work together. I can't even remember all the things that we've partnered on,
but I think they appreciated that I was 18 years old at the time and I could
advocate for myself and what that meant for my health and really recognize what was going on,
an awareness of how incredible this organization was and what it was doing for my life.
(13:37):
So we've had a lot of encounters. I actually, through Be The Match and NMDP,
they set up a donor meet at their annual Be The Match get-together in their headquarter location.
So I actually got to meet my donors because I had two donors.
(14:00):
I had two transplants. The first transplant didn't go as well as they had hoped.
It didn't graph. so then we went back to the registry and found another match
and did that so I got to meet both of them through Be The Match so I mean I
think I'm partnered for life really whenever they call me and they're like can
(14:20):
you I'm like yes when and where.
Well, and I could tell just when we got on Zoom that you and Brian,
you're like, you've got a friendship that has grown over the years.
Yeah, actually, I guess I worked with him, but it was kind of like an internship in the summer.
I really wanted to explore that path. And he even reached out one time about an opening position.
(14:43):
And then that one just didn't go that way. But yeah, through the years, I feel we're connected.
Brian's a really easy person to get along with, talk with. with truly you can feel his passion.
I mean, I think he's the best representative for Be the Match or MDP.
We're all going to learn to say the new name eventually.
(15:04):
And Brie, not to like bring down the mood, but just so that people,
you know, fully understand what you went through.
I mean, what kind of condition were you in when you set out to get your transplant?
And frankly, what would your prognosis have been without one?
Oh, my. That's a good question. I've never had that question before.
(15:27):
So I was 18 at the time. I was in soccer and living a very active high school
life. It was my last semester of high school.
I had just been crowned homecoming queen.
I had just been accepted to the UT Austin.
I was preparing to crown the prom queen.
(15:51):
All that that you can think of was happening in my life.
Well, I started to feel more fatigued than usual.
And I had actually decided for the second semester not to do soccer that year.
I just wanted to focus on other things, my schooling. And I had to,
it didn't make sense to me why I felt tired. If I'm not doing soccer,
(16:13):
then why do I climb the stairs?
And I'm winded, completely winded.
Bruises all over my body. And I started to think, that's weird.
I only got bruises through soccer, but I'm not playing soccer right now.
And I don't remember hitting myself.
Lost color in my skin.
And I just, you know, you write these things off. I just thought,
(16:34):
okay, I'm just more pale. I need more sun. I'm not playing soccer. It's wintertime.
Lost color in my lips. I thought, okay, that's weird. Just put lipstick over
it. No biggie. I like lipstick.
This might be TMI for some people, but I was a woman, and my menstrual cycle
was different as well. all.
(16:55):
There's something called platelets that help with clogging the blood and stopping
it from just flowing everywhere. You heal, it makes scabs.
Didn't have those, didn't know at the time. So my flow was extremely abnormal.
I had to set timers through the night just to take care of whatever I need to
take care of. A 30-minute timer through the night.
(17:17):
So I get 30 minutes of sleep, wake up 30 minutes
again it was really concerning and so
I brought it up to a family friend and they
didn't want to scare me but they had also had a family friend that went through
leukemia and they recognized all the signs and they were like okay don't scare
you but think you need to go see a doctor and it really was scary when it got
(17:43):
to the point where I started popping up with
dots, petechiae, all over it.
That situation. So they go and they diagnosed me, I think two days later,
get my blood drawn and they say, oh, we'll get the results to you next week.
No. Ring-a-ding-a-ling. They call me and I was 30 minutes away from Fiesta, Texas in San Antonio.
(18:07):
And I had to turn back. They were like, your life is at risk.
You need a blood donation right away.
Being 18, I didn't, I was I'll be back tomorrow and we'll take care of this later.
The doctor was like, no, you need to get back right now. I'm not sure how you
are still standing without fainting.
(18:29):
And I was like, oh my gosh, my blood levels were so low.
So I was diagnosed two days later with severe aplastic anemia.
And had I not received treatment, I actually bit familiar with how my life may
have looked if I didn't have a donor.
I made a lot of friends on the bone marrow transplant unit at Texas Children's,
(18:51):
all different ages, lost a few friends to not having a match and having to do
different ways of going about it,
like half matches and just not even having it and trying other treatments.
And I feel truly blessed and lucky to be alive because that's not always the case. Yeah. Wow.
(19:12):
Well, I'm so thankful that you found NMDP and that you were able to have a second
successful transplant. Me too.
So I have a question for both of you, but it's just ignorance on my part for the transplant area.
Unlike I'm guessing, unlike a blood bank, you're not able to store the stem cells or the blood.
(19:34):
So it has to be a live or close timing.
So not exactly previously. Yes.
So something that is new on the horizon, we know there are certain donor tissue
types that are requested more often. than not.
So we do so much more at NMDP beyond just transplants.
(19:59):
We do a lot of research and one
of the things that they are looking into is called a biobank to where we can
contact those young healthy donors that we know tend to be more requested and
have them donate before they are an actual match and freeze those cells.
(20:20):
Very similar to cord blood banking.
We know with cord blood, they can store those cells, liquid nitrogen,
and preserve them for up to 10 years and retest for viability.
So that's definitely something that is new and we expect to see more of.
(20:41):
At the time that Brie was going through treatment, that was not an option.
So you would have your person who matched you donate, and within 24 hours,
usually you were getting those sales.
So it's a very short time from donation to reception.
And remind me, Brie, I think yours came from Costa Rica and Mexico?
(21:07):
From Puerto Rico. And my other donor, I think his origins are from Mexico,
but he was from California.
Yeah. So just wild. And it just amazes me that that's even a possibility.
Yes. In 24 hours. Yeah. Yeah. Uh-huh.
Well, and I've also kind of, in my mind, as I'm listening to the story and taking
(21:28):
it in, I've made Brian like your friendly stalker.
Like he's hunting down in secret the match.
Looking around the corner, sneaking up on, I need you.
Brian, I feel like Brett's picking on you today. You know,
one of my, one of the phrases that always bothers me when somebody is turning
(21:49):
me down to be recruited is when people say I'm good.
And, and that bothers me in the fact that someone's on the other end that is
not good, but that statement alone,
I'm good is exactly why we needed that person as a donor because they are good.
(22:11):
You know, so I kind of feel, I kind of feel like that stalker ish.
I'm like, you know, I know you're good.
Let's have a conversation. Maybe I can change your mind and change your heart
in just a couple of minutes, you know? So, so yeah, I kind of like that in a,
in a friendly kind of way for sure. Yep.
And well, with, I mean, you've, you've turned a few, you've tracked them down,
(22:34):
you've gotten them to be good for somebody else.
I mean, I'm looking through the stats and 125,000 plus transplants and then
6 million or more in patient assistance through that.
Like those seem like really big, hard to quantify numbers.
Like what's, how does that really change the impact or what impact have you guys had?
(22:57):
And what does that look like in the general landscape of everyone that's still
going through or needs treatment? treatment.
Yeah, I mean, we facilitated more than 125,000 transplants since our organization started.
You know, that's that's hope for people.
Used to when someone was diagnosed with a blood cancer like leukemia,
(23:20):
lymphoma, a blood illness like severe aplastic anemia, that was a death sentence years ago.
And now it doesn't have to be. We see miracles like Brie every single day.
You know, a big part of my job that I love is what we do for patients.
And, you know, one of the first patients that I worked with when I started this
(23:44):
job 11 years ago is she was a little bitty.
Now she's a college student. She's engaged to get married.
And we get to see those happen.
You know, those numbers, those statistics, those are great numbers and statistics.
But getting to see the real people, that's what we want others to know is these
(24:05):
are not just numbers on paper.
These are people's lives that we are saving that would not be here had it not
been for this organization and the generosity and kindness of a complete stranger.
That's super, super powerful. And tell me a little bit. Do you guys work full national scale?
(24:26):
Yeah, so NMDP is the National Stem Cell and Marrow Donor Registry Program for
the United States as well as Mexico.
So there are other registries. Each country typically has their own registry,
and we're all interconnected. connected.
So if a hospital starts a search for a patient, they will typically be able
(24:52):
to look not just within our registry in the United States, but they can search
for a donor internationally,
if we don't have one here in the U.S. for that patient.
And then, Bree, I kind of jumped the gun on it a little bit,
and we talked about your amazing survival story, which you guys can't see Brie's
face, but we're looking at a 28-year-old, healthy, beautiful,
(25:15):
vivacious young woman, which Brian, to your point, I mean, there's your statistic, there's your impact.
Brie, any thoughts from you on the impact of the organization?
Man, yeah, it's exactly what Brian said.
To anybody outside of the situation, it all looks the same.
And honestly, for myself, I wasn't aware about this before it happened to me.
(25:39):
Neither was my family. And now my family, they're all advocates.
I mean, Cheyenne told you about it. That just makes me so happy. But the impact is huge.
And not only is it just with that individual whose life is saved,
the impact that that made to all the lives that that one life touches is, you just can't count it.
(26:02):
Priceless. Truly like what Brian said about the first individual that he worked
with and now she's married and all grown up and healthy.
To me, in my mind, it contrasts the little girls that I knew that passed away
at seven and did not get to see that because they did not have a match. So, you know,
(26:23):
I'm just imagining what if we had that one person, that one person was,
it really is the difference between saving that life or not,
because you, you're given a second chance when you do have a transplant donor.
But if you don't have that, I mean, where is your second chance?
Not everybody gets that. It's truly, truly, truly is impactful.
(26:44):
I mean, there's just so many, so many ways that the whole experience has impacted my life forever.
Ways I probably don't even realize.
But definitely, I have a different perspective on life because of it.
I understand what was at stake and what that meant for me. And maybe it was
because I was older and I could process that.
(27:06):
I'm just forever grateful for its impact.
I don't know. Most of us are not wise enough at 18. So I think you might be wise beyond your years.
Maybe dealing with something like aplastic anemia gives you that wisdom.
Oh man, definitely, definitely, definitely, definitely.
It makes you look at everything. You, I mean, maybe, maybe it is my mindset.
(27:33):
Everything changed and I had to look at myself really hard and literally,
literally look myself in the mirror and digest, process what was happening,
why it was happening. I'm going to be okay.
There's just so much during that process that you're putting your trust in other
people, your medical team, your body that you don't really have control of, the registry,
(27:58):
a donor registry, those people working for that registry, what they're doing,
your nurses, your staff, whatever.
There's so much that you have to just let go of and trust.
And so it changes life. Your life is just forever changed.
How often, Bree, do you have moments where you either break down with joy or
(28:18):
tears when you re-experience things that you know you wouldn't have?
I'm assuming you've gone back to Fiesta, Texas. Yes, I have.
What has that surreal experience of time and place been for you?
Yeah, so definitely after maybe like a few years, I had a lot of those moments
where I would do something that, man, I almost thought that I wouldn't be able
(28:43):
to do this. or I'm so grateful that I can.
And it really makes you think there are people out there who don't get to do
this and they have no choice about it.
There were moments during the journey because it's a whole recovery process.
You have a bone marrow transplant and that's not it. You're not just like,
well, there's a hundred days where you're closely monitored because your immune system is so weak.
(29:05):
And so I experienced a lot of those joys that you're talking about during that
timeframe, like taking a shower, taking a step outside without a mask,
leaving my room, rebuilding my muscles.
I lost probably about 20 pounds when I was in the hospital.
And getting my strength back, being able to eat, oh my gosh, that was a relief.
(29:31):
Really living normal life, that really is just a blessing.
I remember the first time that I was able to eat pizza. I can't remember why.
Oh, I remember. So when your immune system's low.
They don't allow you to go out and
eat regular food. You can't go to a restaurant. You can't go to a buffet.
It has to be cooked at home because of the risk of being contaminated, getting sick.
(29:55):
So the first time I was able to eat pizza after my immune system had recovered,
I was crying, eating the pizza, just like sobbing. Like I am so grateful.
The first time I was able to take a shower by myself without my pick line,
crying, extremely grateful.
And the moments that make me cry now and really realize what I have is when
(30:18):
I tell the story again and I remember the friends that I have lost.
And just, I mean, that gets me pretty much every single time.
There's just no forgetting what I have when you really contrast it.
So it's those moments that just touch me.
Yeah, and probably will forever. Probably. Yeah.
(30:39):
Yeah. I mean, let's hope they do touch you forever because that means you're
surviving and thriving and you have the perspective. Absolutely.
Yeah. Well, looking towards the future, Brian, what's next for NMDP?
And then Brie, I want to know what's next for you.
You know, it amazes me the things that science is coming up with.
(31:03):
You know, the biobank ability,
we now have a program that's called HLA today where they are able to use donors
who are less than a perfect match and have the same outcome for patients.
And what that means is so many more people will be cured and have that second
(31:28):
chance that never did before.
And it's it's just so amazing to see
the things that you know we're able
to make happen for patients that were never able to
happen before it just means so many more people are
going to be able to be helped and that's that to me is incredible you know working
with so many patients over the years you know seeing these patients because
(31:52):
their their race and their ethnicity play a very key role in whether or not
they'll find their donor.
And, you know, some of those patients had less than a 30% chance of finding a match.
And to see those patients now have the equal opportunity to find a donor,
(32:14):
just like everybody else, because we're not having to find necessarily that 100% match.
You know getting to give that to people that that's where our organization is
headed and so many lives are gonna be saved and and it's just an amazing thing to me.
Brie, what's next for you? It doesn't have to be anything to do with bone marrow.
(32:38):
We just want to know what you're up to. Oh, man.
My perspective on life is constantly evolving.
And like I said earlier, I'm a new person every day.
And I truly live in the present as much as I possibly can.
So what's next for me? I really don't know.
(32:59):
But what I do know is that I am always open to something new,
to a challenge, to an opportunity like these.
These are the moments that I'm like, oh, a lifetime will always contribute,
will always find a way to share this story.
And I think my strongest way of being an advocate is just living my life and
(33:21):
showing people a different perspective, something that I gained from the whole
journey that I went through.
And every chance I get, I share with them about Be The Match,
my story, my journey, and hopefully inspire some people.
And I definitely have along the way. I have friends, partners that have joined
the registry because of my life.
(33:42):
So I think that that's the best I can do every day moving forward.
Professionally, I don't know. I'm a little weird person, I think.
I think it's not all about the profession for me, at least in my journey.
It's not. It's about the quality of life that I live with the people that I
love and who I touch and connect with. is.
(34:03):
Through that, I think that's where I make my impact. So looking forward,
I'm just going to keep living my life the best I can. Yeah.
That's really cool. I mean, I'm sure you have learned to just see that divine
spark of the daily life as anywhere you go. Absolutely.
All right. So super inspiring from what you guys have been through,
(34:26):
what you're going through and the the mission you're on to help others,
where are you gaining outside inspiration to help fill your cup outside of NMDP?
That's a hard question for me. I, I kind of get fussed at sometimes for not
separating the work from the, the life side of things.
(34:49):
To me, you don't work in this line of, you know, this, this career without the
two being very tightly integrated.
You know, my patients become family. I get invitations to birthday parties and
weddings and christenings and all kinds of things.
You know, I just watching these people that I get to work with,
(35:13):
you know, being part of their lives and see even even for those that don't survive,
you know, there there are plenty that that don't make it.
And, you know, getting to be part of their parents lives and see them go on
with life, you know, after they've been through this horrific thing.
(35:35):
For me it makes me appreciate the little
things you know when i get sick and i just you know you you you want to feel
sorry for yourself on some of those days but then you think of all these people
that have been through much worse it makes you it really puts things into perspective for me,
(35:57):
you know there you realize working in this how fortunate you are you know you
take things for granted in our everyday life that, you know,
just some people don't have.
And it's not something I differentiate between the two, unfortunately.
But, you know, it's had a huge impact on who I am and how I live my daily life.
(36:20):
For me, similar to Brian, really, the inspiration is from others.
It's not my line of work, but it's just that powerful that I would understand
being in that line of work. That is something that just is symbiotic,
just works so beautifully together.
I draw my inspiration just every day from other people, the things around me,
(36:42):
the beauty and the small things, the small moments.
Family is so huge and honestly, they're a gift.
And so for me, a lot of my inspiration comes from my loved ones and growing
with them, growing. Yeah.
That's very cool. I'm glad you guys are able to share that with us.
(37:03):
So my last question for you guys, and maybe, maybe it's more practical than
anything, but what can our community do for NMDP?
Eh, we don't care about NMDP. What can our community do for those that you provide matches with?
How do we do it? The first thing is obviously if you're eligible to register, go register.
(37:27):
If you are between 18 and 40 years of age and you are healthy and you have the
heart to help a stranger, registration is super easy. You don't have to find us.
All you have to do is text the word HOPE to 61474.
We're going to send you that swab kit in the mail.
(37:50):
Swab it home and turn it back in. It's prepaid. It's free. It's easy to do.
But more importantly, be committed. You know, we unfortunately have seen,
especially since COVID,
we have seen a huge decrease in the amount of people who are actually willing
(38:11):
to donate when they get that call.
It's not enough just to fill out a form. It's not enough just to send that swab back in.
Do this with the intention that you're going to help somebody follow through
with that commitment. It means a big difference.
Beyond registering, you know, in doing this job for over a decade,
(38:32):
I've heard both of you say on this call already, we never knew this organization existed.
And every patient family that I have ever worked with in 10 going on 11 years
never knew we existed until they needed our help.
If you're hearing this program, if you're listening, every one of us have some type of social media.
(38:56):
If you heard me say 18 to 40 and you're over that age, if you're overqualified
like I am, you can still be a huge advocate.
We have our national NMDP Facebook and Instagram, but we also have our regional pages.
I'm in Southeast Texas. So we're the NMDP Southeast Texas team on social media.
(39:22):
Share those social media stories. That's where we help get those patient stories out.
It doesn't cost you anything to hit like and share. And we have found so many
donors that were just sitting, sipping coffee and came across a Facebook post and thought, why not?
I'll take a couple of minutes and fill this out, you know, and also in a more direct way.
(39:47):
You know, my territory alone, we cover a huge territory in Southeast Texas,
and there are only two of us who are actually employed that are out in the community.
We always need volunteers.
There is no age limit to volunteer.
We have people that, you know, they bring their kids along with them.
(40:10):
They bring their significant other with them. They bring their dog with them.
You know, there's no excuse for not getting involved and helping out.
There are so many different avenues you can help.
You know, we even have patients that are, like Bree said, you know,
they're immune compromised. They can't get out in public and do things.
We have elderly volunteers that their health doesn't allow them,
(40:33):
but they sit at home and they label the swab kits for us that we use at donor drives.
There are so many ways that people can get involved. And I just encourage,
you know, if they go, again, that link that they can text for,
they just text the word HOPE to 61474.
(40:54):
That takes you to our webpage where you can learn more about the organization.
You can register from that as a donor.
And you can also register as a volunteer and see what's going on in your community. Get involved.
That's the biggest thing I ask. Get involved. all, you know,
be a voice for these patients that are in need.
(41:15):
Perfect. Well, thank you so much for letting us know how to do it,
what we can do, and then really just for sharing your stories and backgrounds
and your heart for helping others and instilling life.
Absolutely. And, you know, it's amazing. One little story that I want to share
before we part is I really met Bree well after she had gone through her transplant.
(41:39):
She was healthy and started volunteering with our organization and was interning with us.
And at that time, I was our patient and hospital liaison. So I spent a lot of
time in the Houston Medical Center and I dragged Bree one day with me to Texas Children's Hospital.
(41:59):
She had not been there in years on the transplant floor.
And I don't know if you remember this day, Bree, but she was very excited to
go back because she had not been there. but she was also curious who was still
there staff wise that she recognized.
And I don't think she realized the impact that she had on the,
(42:22):
the nurses and the doctors that were working there.
It was so cool to see some of those nurses that were like, Oh my gosh,
you're, you're all grown up. You were that.
So they knew her as the girl that did yoga in her room while she was going So
with her transplant, they were like, when she was having these really bad days,
(42:43):
she was in her room doing yoga.
And that's what got her through her bad days.
And she left that lasting impression on so many people.
So, you know, this is a two-way street.
You know, we have a great impact on patients, but those patients leave a big
impact on us too. And I hope Bree realizes how much of an impact that she has
(43:06):
left on so many people through her journey.
Thank you, Brian. It is, like I said, you're not just impacting that one life that's saved.
I realize now, like, I mean, you touch so many people, so many lives.
Every day is an opportunity. Every moment is an opportunity to impact somebody positively.
(43:28):
And I really feel like that's my gift. That's a purpose that I take personally
and passionately within my own life, my circle, goal, whoever I touch,
is what impact am I leaving with these people?
That's amazing. Thank you. Yeah. Thank you so much for being impactful for us
today. I'm glad we could do this.
Yeah. What a beautiful way to end generous impact with Bree's impact.
(43:52):
That was a great tie-in. Thanks, Brian. Absolutely.
Wow. I don't know about y'all, but thinking about the young ladies that Bree
met through treatment that didn't make it really got me.
I wish I had known about NMDP before my window to be a donor closed.
I hope you gathered inspiration from Bree's story and will sign up to be a donor if you are able.
(44:16):
And if you aren't, Brian shared a ton of ways to get involved.
Find them at bethematch.org.
Welcome to Generous Impact. This is Brett Brummett. And this is Amanda Brummett.
We are joined today by Brian Allison from NMDP, formerly known as the National
Marrow Donor Program, and Brianna Donis, a recipient.
In this episode, you'll hear how NMDP saves lives through cell therapy,
and then you'll get to hear Bree's amazing story of being one of those that was saved.
(00:24):
Well, Brian and Bree, thank you so much Thank you so much for both being here today.
I would love it if you could just start by each telling us who you are,
both personally and professionally.
Ladies first. Oh, ladies first. Okay.
So my name is Brianna Donis. I am a 28-year-old woman.
I personally am an individual just living my life day-to-day in the most meaningful
(00:53):
way possible. responsible, truly trying to be present all the time.
Each day I'm a new person. So that's kind of just how I go with life.
And professionally, I'm working as a HR project admin in the energy sector.
And I also have my own small business on an Etsy shop.
(01:16):
So I design t-shirts creatively creatively, wherever I can express myself.
I'm just a very happy individual. I truly feel like that's where my light is.
So I feel blessed to be able to find a way to share that with the world.
That's who I am so far. Beautiful.
And you're going to get to hear more about Brie's story in a little bit and
(01:37):
maybe why you have such an amazing outlook on life.
Brian, how about you? Yeah. So my name is Brian Allison.
I am a dad, a granddad, a drummer, a fishing and off-road enthusiast.
Professionally, I am the account manager for NMDP in Southeast Texas.
(01:58):
August will be 11 years with this organization doing what I do.
So I always tell people they're going to have to run me off. I love what I do.
That's awesome. I feel like I've found so many drummers lately,
just this weekend, we had a realization that on my 40 to 50 year old,
old man, baseball team, five people own drum sets.
(02:20):
So I'm just going to ask what brand of drums do you own?
Currently Yamaha. Okay. There
we go. Just had to find out. It seems like a weird serendipitous of life.
I've been a big Mapex fan for years and within the last year thought I would
try something different. So.
Right up to Yamaha. Yeah. Well, let's get on the professional side, Brian.
(02:45):
And I want to see if you can, I know you can, but would you mind telling us
a little more about what NMDP does?
And I'll just point out real fast that you guys were formerly known as the National
Miro Donor Program and Be The Match.
Yeah, absolutely. So let's start off, if you don't mind, let's talk about this
name change. because it has taken a little bit of getting used to.
(03:10):
When our organization was started, it was the National Marrow Donor Program.
So hospitals shortened that, and they've called us NMDP for years.
I guess around 12 years ago for our public-facing, our recruitment department,
we adopted the name Be The Match because we wanted something kind of catchy.
(03:33):
But that we learned over the
years has created some confusion we had
all kinds of people that thought we were a dating service we're
not we do hook you up with the most awesome date you can find but not quite
the romantic thing you know college students would often think okay these guys
(03:53):
are setting up on our college campus they thought we were trying to hook them
up with an internship or match them up to a job.
So it kind of created some confusion, even with our patients,
because we would talk to these patients and say, Hey, you know, be the match.
We would like to work with you to share your story.
And these patients would say, well, that's great. But my doctor is not searching,
(04:16):
be the match. My doctor is searching NMDP.
So the hospitals really never ever quit calling us NMDP.
And, you know, to make it simple, less confusing, you know, we kind of went
back to our roots, so to speak.
The hospitals call us NMDP, so we are now all under the NMDP umbrella.
(04:38):
What our organization does, we work with patients who have been diagnosed with
some type of blood illness.
A lot of those are leukemia, lymphoma, sickle cell, and aplastic anemia.
Those are probably the most four common, but there are about 76 illnesses that
are curable with a stem cell or marrow transplant.
(05:00):
The problem is when someone is told you have to have this transplant for survival,
70% of those patients don't have a donor in their family.
They are relying on a stranger to cure them or to save their life.
That's where we come in. We are out in your community every day,
everywhere in the United States.
(05:22):
We are advocating for those patients, raising awareness of the need for donors.
We're educating people on if you were a match for a patient,
this is what your donation would look like because there are a lot of misconceptions
and misinformation about stem cell and particularly marrow donation.
So we're educating people and those people that want to step up and help our community,
(05:47):
we help them get into the national registry that hospitals not only in the United
States, but globally are relying on to help find those unrelated donors from the United States.
So that's kind of what we do. It's a lot of community health education.
And then I know you said there's a lot of confusion around stem cells versus bone marrow.
(06:11):
Has that gotten better or is it still just very confusing for the public?
There are still a lot of misinformation out there.
The biggest thing when people hear bone marrow donation, they automatically think huge needle.
They think somebody is going to drill into me. It's got to be super painful.
(06:32):
That is the biggest thing that we battle to overcome.
What we want most people to know is 90% of our donors now are asked for stem cell donation.
Stem cell is actually the more common, and it's actually collected through an
IV in your arm, similar to plasma or platelet donation.
You know, does it hurt? It's a simple needle stick. You know,
(06:54):
it's not super painful, but it's, you know, it's like a prick, nothing major.
And for those that the 10% of our donors that do marrow, marrow is actually
collected under general anesthesia.
The donor's asleep while they collect it.
When you wake up, those muscles, they collect right above your butt.
(07:15):
Those muscles are a little bit irritated. Just like if you had a COVID shot,
flu shot, you know, your arm was sore for a day or two.
It didn't keep you from going about your daily routine.
Same thing with marrow donation. inflammation you're going
to know that you did something but it's not
going to be excruciating where you can't go
(07:35):
on with life you know so often i hear our
donors say oh i feel like i did squats or
i feel like i did heavy leg day you know our
donors from up north something we we're
not familiar with here in texas but our donors up north often say oh i feel
like i fell ice skating you know so it's not a big painful thing like most people
(07:56):
think it is and that's It's the biggest reason people are hesitant to sign up
because they think it's going to hurt and it doesn't.
Well, I mean, and I'll have a soreness or a pain for no good reason.
Please let it be because I'm actually saving someone's life.
That would be great. I'm 45 years old. I hurt myself getting out of bed sometimes in the morning.
(08:18):
That's just part of getting older.
But yeah, I'm like you. I'm like a little bit of discomfort giving somebody a second chance at life.
That is a totally worth it tradeoff. Absolutely.
Well, so Brian and Bree, Brett and I both work in the health care space and
neither of us even knew about NMDP until Cheyenne, Bree's sister,
(08:44):
shared her story in the organization with me.
I'm an organ donor. I've done all the registry and all the stuff for that.
Never even knew I needed to sign up to be a bone marrow donor.
So I'm so glad that, Brian, that you dove in with the ask right up there.
We want everybody to go sign up to be a donor.
(09:05):
So Cheyenne, Bree's sister, brought me to NMDP, but I want to know what brought
you guys to it. And Brian, I'll let you go first.
And then Bree, tell us how you found the organization. conversation?
Oh, mine is kind of a loaded question. So people hear my background and they
wonder how in the world did you end up here?
So I started off life working in public safety.
(09:28):
I was a paramedic and a police officer.
When I was going through the police academy, one of my co-workers,
his daughter was born premature and needed blood at birth.
And I was that guy that was terrified to donate.
And when I say terrified, I am the guy that I don't do needles, just no.
(09:48):
So unfortunately, the day after my friend, his daughter was born premature and
needed blood at birth, the next day at our police academy, here rolls up the blood bus.
And I couldn't be the only cadet that didn't give for his friend's daughter.
So I got on that bus and donated. Guess what? I didn't pass out.
(10:11):
I didn't get sick. It didn't hurt.
But I got to see the good that it did.
Fast forward about 10 years or so, I needed a career change,
had no idea what I was going to do.
Went back to school and got a degree in marketing and was actually donating blood.
(10:31):
And the phlebotomist was kind of picking at me. He said, so what are you going
to do with this new fancy degree that you have?
And I joked and I said, I guess be unemployed.
And he said, well, you know, you're passionate about donating.
You should consider applying we're hiring somebody
here for the blood center and that's how I got started was
(10:51):
initially as a blood donor recruiter and
we had the marrow program within our blood
center and and I fell in love with the program the biggest thing that drew me
to it over the blood side of operations was the fact that they got to work with
patients and I really love patient I loved that about being a paramedic, getting to help people.
(11:17):
As a representative for NMDP, I still, I get to do the same thing.
You know, imagine hearing your name or your mom's name or your kid's name followed
by a diagnosis and a defined amount of time to live,
unless you can find this stranger that's willing to help.
(11:40):
That's where I come into these people's lives. And I get to say,
hey, I'm this crazy bald guy that's willing to go just about anywhere to share
your story and help you find this stranger that's going to save your life.
And I get to give them back that little bit of hope.
And that's what I love about what I do.
(12:02):
That is incredible. All right, Bree. I know you didn't go searching for NMDP.
So how did you end up finding them?
So I had been diagnosed with severe aplastic anemia, and it was part of my options for treatment.
It was, I think, the second or third option. The first option they really want
(12:23):
to go with is a related donor.
They tested my family. No one was a match. No one was a partial match.
So they said, okay, well, let's go to the registry and see if you have any matches
there. And Be The Match was who they went to, the donor program they went through.
And they were pretty close by each other, the hospital and the regional Gulf
(12:48):
Houston blood hospital.
Place building where everything's at. So they reached out to them and I had so many, so many donors.
So I got in contact with, I guess, whoever was representing me.
And we just started our journey from there with my medical team.
And the relationship grew. It wasn't just a hospital medical team.
(13:12):
Be The Match really got to know me as an individual.
We did a lot of work together. I can't even remember all the things that we've partnered on,
but I think they appreciated that I was 18 years old at the time and I could
advocate for myself and what that meant for my health and really recognize what was going on,
an awareness of how incredible this organization was and what it was doing for my life.
(13:37):
So we've had a lot of encounters. I actually, through Be The Match and NMDP,
they set up a donor meet at their annual Be The Match get-together in their headquarter location.
So I actually got to meet my donors because I had two donors.
(14:00):
I had two transplants. The first transplant didn't go as well as they had hoped.
It didn't graph. so then we went back to the registry and found another match
and did that so I got to meet both of them through Be The Match so I mean I
think I'm partnered for life really whenever they call me and they're like can
(14:20):
you I'm like yes when and where.
Well, and I could tell just when we got on Zoom that you and Brian,
you're like, you've got a friendship that has grown over the years.
Yeah, actually, I guess I worked with him, but it was kind of like an internship in the summer.
I really wanted to explore that path. And he even reached out one time about an opening position.
(14:43):
And then that one just didn't go that way. But yeah, through the years, I feel we're connected.
Brian's a really easy person to get along with, talk with. with truly you can feel his passion.
I mean, I think he's the best representative for Be the Match or MDP.
We're all going to learn to say the new name eventually.
(15:04):
And Brie, not to like bring down the mood, but just so that people,
you know, fully understand what you went through.
I mean, what kind of condition were you in when you set out to get your transplant?
And frankly, what would your prognosis have been without one?
Oh, my. That's a good question. I've never had that question before.
(15:27):
So I was 18 at the time. I was in soccer and living a very active high school
life. It was my last semester of high school.
I had just been crowned homecoming queen.
I had just been accepted to the UT Austin.
I was preparing to crown the prom queen.
(15:51):
All that that you can think of was happening in my life.
Well, I started to feel more fatigued than usual.
And I had actually decided for the second semester not to do soccer that year.
I just wanted to focus on other things, my schooling. And I had to,
it didn't make sense to me why I felt tired. If I'm not doing soccer,
(16:13):
then why do I climb the stairs?
And I'm winded, completely winded.
Bruises all over my body. And I started to think, that's weird.
I only got bruises through soccer, but I'm not playing soccer right now.
And I don't remember hitting myself.
Lost color in my skin.
And I just, you know, you write these things off. I just thought,
(16:34):
okay, I'm just more pale. I need more sun. I'm not playing soccer. It's wintertime.
Lost color in my lips. I thought, okay, that's weird. Just put lipstick over
it. No biggie. I like lipstick.
This might be TMI for some people, but I was a woman, and my menstrual cycle
was different as well. all.
(16:55):
There's something called platelets that help with clogging the blood and stopping
it from just flowing everywhere. You heal, it makes scabs.
Didn't have those, didn't know at the time. So my flow was extremely abnormal.
I had to set timers through the night just to take care of whatever I need to
take care of. A 30-minute timer through the night.
(17:17):
So I get 30 minutes of sleep, wake up 30 minutes
again it was really concerning and so
I brought it up to a family friend and they
didn't want to scare me but they had also had a family friend that went through
leukemia and they recognized all the signs and they were like okay don't scare
you but think you need to go see a doctor and it really was scary when it got
(17:43):
to the point where I started popping up with
dots, petechiae, all over it.
That situation. So they go and they diagnosed me, I think two days later,
get my blood drawn and they say, oh, we'll get the results to you next week.
No. Ring-a-ding-a-ling. They call me and I was 30 minutes away from Fiesta, Texas in San Antonio.
(18:07):
And I had to turn back. They were like, your life is at risk.
You need a blood donation right away.
Being 18, I didn't, I was I'll be back tomorrow and we'll take care of this later.
The doctor was like, no, you need to get back right now. I'm not sure how you
are still standing without fainting.
(18:29):
And I was like, oh my gosh, my blood levels were so low.
So I was diagnosed two days later with severe aplastic anemia.
And had I not received treatment, I actually bit familiar with how my life may
have looked if I didn't have a donor.
I made a lot of friends on the bone marrow transplant unit at Texas Children's,
(18:51):
all different ages, lost a few friends to not having a match and having to do
different ways of going about it,
like half matches and just not even having it and trying other treatments.
And I feel truly blessed and lucky to be alive because that's not always the case. Yeah. Wow.
(19:12):
Well, I'm so thankful that you found NMDP and that you were able to have a second
successful transplant. Me too.
So I have a question for both of you, but it's just ignorance on my part for the transplant area.
Unlike I'm guessing, unlike a blood bank, you're not able to store the stem cells or the blood.
(19:34):
So it has to be a live or close timing.
So not exactly previously. Yes.
So something that is new on the horizon, we know there are certain donor tissue
types that are requested more often. than not.
So we do so much more at NMDP beyond just transplants.
(19:59):
We do a lot of research and one
of the things that they are looking into is called a biobank to where we can
contact those young healthy donors that we know tend to be more requested and
have them donate before they are an actual match and freeze those cells.
(20:20):
Very similar to cord blood banking.
We know with cord blood, they can store those cells, liquid nitrogen,
and preserve them for up to 10 years and retest for viability.
So that's definitely something that is new and we expect to see more of.
(20:41):
At the time that Brie was going through treatment, that was not an option.
So you would have your person who matched you donate, and within 24 hours,
usually you were getting those sales.
So it's a very short time from donation to reception.
And remind me, Brie, I think yours came from Costa Rica and Mexico?
(21:07):
From Puerto Rico. And my other donor, I think his origins are from Mexico,
but he was from California.
Yeah. So just wild. And it just amazes me that that's even a possibility.
Yes. In 24 hours. Yeah. Yeah. Uh-huh.
Well, and I've also kind of, in my mind, as I'm listening to the story and taking
(21:28):
it in, I've made Brian like your friendly stalker.
Like he's hunting down in secret the match.
Looking around the corner, sneaking up on, I need you.
Brian, I feel like Brett's picking on you today. You know,
one of my, one of the phrases that always bothers me when somebody is turning
(21:49):
me down to be recruited is when people say I'm good.
And, and that bothers me in the fact that someone's on the other end that is
not good, but that statement alone,
I'm good is exactly why we needed that person as a donor because they are good.
(22:11):
You know, so I kind of feel, I kind of feel like that stalker ish.
I'm like, you know, I know you're good.
Let's have a conversation. Maybe I can change your mind and change your heart
in just a couple of minutes, you know? So, so yeah, I kind of like that in a,
in a friendly kind of way for sure. Yep.
And well, with, I mean, you've, you've turned a few, you've tracked them down,
(22:34):
you've gotten them to be good for somebody else.
I mean, I'm looking through the stats and 125,000 plus transplants and then
6 million or more in patient assistance through that.
Like those seem like really big, hard to quantify numbers.
Like what's, how does that really change the impact or what impact have you guys had?
(22:57):
And what does that look like in the general landscape of everyone that's still
going through or needs treatment? treatment.
Yeah, I mean, we facilitated more than 125,000 transplants since our organization started.
You know, that's that's hope for people.
Used to when someone was diagnosed with a blood cancer like leukemia,
(23:20):
lymphoma, a blood illness like severe aplastic anemia, that was a death sentence years ago.
And now it doesn't have to be. We see miracles like Brie every single day.
You know, a big part of my job that I love is what we do for patients.
And, you know, one of the first patients that I worked with when I started this
(23:44):
job 11 years ago is she was a little bitty.
Now she's a college student. She's engaged to get married.
And we get to see those happen.
You know, those numbers, those statistics, those are great numbers and statistics.
But getting to see the real people, that's what we want others to know is these
(24:05):
are not just numbers on paper.
These are people's lives that we are saving that would not be here had it not
been for this organization and the generosity and kindness of a complete stranger.
That's super, super powerful. And tell me a little bit. Do you guys work full national scale?
(24:26):
Yeah, so NMDP is the National Stem Cell and Marrow Donor Registry Program for
the United States as well as Mexico.
So there are other registries. Each country typically has their own registry,
and we're all interconnected. connected.
So if a hospital starts a search for a patient, they will typically be able
(24:52):
to look not just within our registry in the United States, but they can search
for a donor internationally,
if we don't have one here in the U.S. for that patient.
And then, Bree, I kind of jumped the gun on it a little bit,
and we talked about your amazing survival story, which you guys can't see Brie's
face, but we're looking at a 28-year-old, healthy, beautiful,
(25:15):
vivacious young woman, which Brian, to your point, I mean, there's your statistic, there's your impact.
Brie, any thoughts from you on the impact of the organization?
Man, yeah, it's exactly what Brian said.
To anybody outside of the situation, it all looks the same.
And honestly, for myself, I wasn't aware about this before it happened to me.
(25:39):
Neither was my family. And now my family, they're all advocates.
I mean, Cheyenne told you about it. That just makes me so happy. But the impact is huge.
And not only is it just with that individual whose life is saved,
the impact that that made to all the lives that that one life touches is, you just can't count it.
(26:02):
Priceless. Truly like what Brian said about the first individual that he worked
with and now she's married and all grown up and healthy.
To me, in my mind, it contrasts the little girls that I knew that passed away
at seven and did not get to see that because they did not have a match. So, you know,
(26:23):
I'm just imagining what if we had that one person, that one person was,
it really is the difference between saving that life or not,
because you, you're given a second chance when you do have a transplant donor.
But if you don't have that, I mean, where is your second chance?
Not everybody gets that. It's truly, truly, truly is impactful.
(26:44):
I mean, there's just so many, so many ways that the whole experience has impacted my life forever.
Ways I probably don't even realize.
But definitely, I have a different perspective on life because of it.
I understand what was at stake and what that meant for me. And maybe it was
because I was older and I could process that.
(27:06):
I'm just forever grateful for its impact.
I don't know. Most of us are not wise enough at 18. So I think you might be wise beyond your years.
Maybe dealing with something like aplastic anemia gives you that wisdom.
Oh man, definitely, definitely, definitely, definitely.
It makes you look at everything. You, I mean, maybe, maybe it is my mindset.
(27:33):
Everything changed and I had to look at myself really hard and literally,
literally look myself in the mirror and digest, process what was happening,
why it was happening. I'm going to be okay.
There's just so much during that process that you're putting your trust in other
people, your medical team, your body that you don't really have control of, the registry,
(27:58):
a donor registry, those people working for that registry, what they're doing,
your nurses, your staff, whatever.
There's so much that you have to just let go of and trust.
And so it changes life. Your life is just forever changed.
How often, Bree, do you have moments where you either break down with joy or
(28:18):
tears when you re-experience things that you know you wouldn't have?
I'm assuming you've gone back to Fiesta, Texas. Yes, I have.
What has that surreal experience of time and place been for you?
Yeah, so definitely after maybe like a few years, I had a lot of those moments
where I would do something that, man, I almost thought that I wouldn't be able
(28:43):
to do this. or I'm so grateful that I can.
And it really makes you think there are people out there who don't get to do
this and they have no choice about it.
There were moments during the journey because it's a whole recovery process.
You have a bone marrow transplant and that's not it. You're not just like,
well, there's a hundred days where you're closely monitored because your immune system is so weak.
(29:05):
And so I experienced a lot of those joys that you're talking about during that
timeframe, like taking a shower, taking a step outside without a mask,
leaving my room, rebuilding my muscles.
I lost probably about 20 pounds when I was in the hospital.
And getting my strength back, being able to eat, oh my gosh, that was a relief.
(29:31):
Really living normal life, that really is just a blessing.
I remember the first time that I was able to eat pizza. I can't remember why.
Oh, I remember. So when your immune system's low.
They don't allow you to go out and
eat regular food. You can't go to a restaurant. You can't go to a buffet.
It has to be cooked at home because of the risk of being contaminated, getting sick.
(29:55):
So the first time I was able to eat pizza after my immune system had recovered,
I was crying, eating the pizza, just like sobbing. Like I am so grateful.
The first time I was able to take a shower by myself without my pick line,
crying, extremely grateful.
And the moments that make me cry now and really realize what I have is when
(30:18):
I tell the story again and I remember the friends that I have lost.
And just, I mean, that gets me pretty much every single time.
There's just no forgetting what I have when you really contrast it.
So it's those moments that just touch me.
Yeah, and probably will forever. Probably. Yeah.
(30:39):
Yeah. I mean, let's hope they do touch you forever because that means you're
surviving and thriving and you have the perspective. Absolutely.
Yeah. Well, looking towards the future, Brian, what's next for NMDP?
And then Brie, I want to know what's next for you.
You know, it amazes me the things that science is coming up with.
(31:03):
You know, the biobank ability,
we now have a program that's called HLA today where they are able to use donors
who are less than a perfect match and have the same outcome for patients.
And what that means is so many more people will be cured and have that second
(31:28):
chance that never did before.
And it's it's just so amazing to see
the things that you know we're able
to make happen for patients that were never able to
happen before it just means so many more people are
going to be able to be helped and that's that to me is incredible you know working
with so many patients over the years you know seeing these patients because
(31:52):
their their race and their ethnicity play a very key role in whether or not
they'll find their donor.
And, you know, some of those patients had less than a 30% chance of finding a match.
And to see those patients now have the equal opportunity to find a donor,
(32:14):
just like everybody else, because we're not having to find necessarily that 100% match.
You know getting to give that to people that that's where our organization is
headed and so many lives are gonna be saved and and it's just an amazing thing to me.
Brie, what's next for you? It doesn't have to be anything to do with bone marrow.
(32:38):
We just want to know what you're up to. Oh, man.
My perspective on life is constantly evolving.
And like I said earlier, I'm a new person every day.
And I truly live in the present as much as I possibly can.
So what's next for me? I really don't know.
(32:59):
But what I do know is that I am always open to something new,
to a challenge, to an opportunity like these.
These are the moments that I'm like, oh, a lifetime will always contribute,
will always find a way to share this story.
And I think my strongest way of being an advocate is just living my life and
(33:21):
showing people a different perspective, something that I gained from the whole
journey that I went through.
And every chance I get, I share with them about Be The Match,
my story, my journey, and hopefully inspire some people.
And I definitely have along the way. I have friends, partners that have joined
the registry because of my life.
(33:42):
So I think that that's the best I can do every day moving forward.
Professionally, I don't know. I'm a little weird person, I think.
I think it's not all about the profession for me, at least in my journey.
It's not. It's about the quality of life that I live with the people that I
love and who I touch and connect with. is.
(34:03):
Through that, I think that's where I make my impact. So looking forward,
I'm just going to keep living my life the best I can. Yeah.
That's really cool. I mean, I'm sure you have learned to just see that divine
spark of the daily life as anywhere you go. Absolutely.
All right. So super inspiring from what you guys have been through,
(34:26):
what you're going through and the the mission you're on to help others,
where are you gaining outside inspiration to help fill your cup outside of NMDP?
That's a hard question for me. I, I kind of get fussed at sometimes for not
separating the work from the, the life side of things.
(34:49):
To me, you don't work in this line of, you know, this, this career without the
two being very tightly integrated.
You know, my patients become family. I get invitations to birthday parties and
weddings and christenings and all kinds of things.
You know, I just watching these people that I get to work with,
(35:13):
you know, being part of their lives and see even even for those that don't survive,
you know, there there are plenty that that don't make it.
And, you know, getting to be part of their parents lives and see them go on
with life, you know, after they've been through this horrific thing.
(35:35):
For me it makes me appreciate the little
things you know when i get sick and i just you know you you you want to feel
sorry for yourself on some of those days but then you think of all these people
that have been through much worse it makes you it really puts things into perspective for me,
(35:57):
you know there you realize working in this how fortunate you are you know you
take things for granted in our everyday life that, you know,
just some people don't have.
And it's not something I differentiate between the two, unfortunately.
But, you know, it's had a huge impact on who I am and how I live my daily life.
(36:20):
For me, similar to Brian, really, the inspiration is from others.
It's not my line of work, but it's just that powerful that I would understand
being in that line of work. That is something that just is symbiotic,
just works so beautifully together.
I draw my inspiration just every day from other people, the things around me,
(36:42):
the beauty and the small things, the small moments.
Family is so huge and honestly, they're a gift.
And so for me, a lot of my inspiration comes from my loved ones and growing
with them, growing. Yeah.
That's very cool. I'm glad you guys are able to share that with us.
(37:03):
So my last question for you guys, and maybe, maybe it's more practical than
anything, but what can our community do for NMDP?
Eh, we don't care about NMDP. What can our community do for those that you provide matches with?
How do we do it? The first thing is obviously if you're eligible to register, go register.
(37:27):
If you are between 18 and 40 years of age and you are healthy and you have the
heart to help a stranger, registration is super easy. You don't have to find us.
All you have to do is text the word HOPE to 61474.
We're going to send you that swab kit in the mail.
(37:50):
Swab it home and turn it back in. It's prepaid. It's free. It's easy to do.
But more importantly, be committed. You know, we unfortunately have seen,
especially since COVID,
we have seen a huge decrease in the amount of people who are actually willing
(38:11):
to donate when they get that call.
It's not enough just to fill out a form. It's not enough just to send that swab back in.
Do this with the intention that you're going to help somebody follow through
with that commitment. It means a big difference.
Beyond registering, you know, in doing this job for over a decade,
(38:32):
I've heard both of you say on this call already, we never knew this organization existed.
And every patient family that I have ever worked with in 10 going on 11 years
never knew we existed until they needed our help.
If you're hearing this program, if you're listening, every one of us have some type of social media.
(38:56):
If you heard me say 18 to 40 and you're over that age, if you're overqualified
like I am, you can still be a huge advocate.
We have our national NMDP Facebook and Instagram, but we also have our regional pages.
I'm in Southeast Texas. So we're the NMDP Southeast Texas team on social media.
(39:22):
Share those social media stories. That's where we help get those patient stories out.
It doesn't cost you anything to hit like and share. And we have found so many
donors that were just sitting, sipping coffee and came across a Facebook post and thought, why not?
I'll take a couple of minutes and fill this out, you know, and also in a more direct way.
(39:47):
You know, my territory alone, we cover a huge territory in Southeast Texas,
and there are only two of us who are actually employed that are out in the community.
We always need volunteers.
There is no age limit to volunteer.
We have people that, you know, they bring their kids along with them.
(40:10):
They bring their significant other with them. They bring their dog with them.
You know, there's no excuse for not getting involved and helping out.
There are so many different avenues you can help.
You know, we even have patients that are, like Bree said, you know,
they're immune compromised. They can't get out in public and do things.
We have elderly volunteers that their health doesn't allow them,
(40:33):
but they sit at home and they label the swab kits for us that we use at donor drives.
There are so many ways that people can get involved. And I just encourage,
you know, if they go, again, that link that they can text for,
they just text the word HOPE to 61474.
(40:54):
That takes you to our webpage where you can learn more about the organization.
You can register from that as a donor.
And you can also register as a volunteer and see what's going on in your community. Get involved.
That's the biggest thing I ask. Get involved. all, you know,
be a voice for these patients that are in need.
(41:15):
Perfect. Well, thank you so much for letting us know how to do it,
what we can do, and then really just for sharing your stories and backgrounds
and your heart for helping others and instilling life.
Absolutely. And, you know, it's amazing. One little story that I want to share
before we part is I really met Bree well after she had gone through her transplant.
(41:39):
She was healthy and started volunteering with our organization and was interning with us.
And at that time, I was our patient and hospital liaison. So I spent a lot of
time in the Houston Medical Center and I dragged Bree one day with me to Texas Children's Hospital.
(41:59):
She had not been there in years on the transplant floor.
And I don't know if you remember this day, Bree, but she was very excited to
go back because she had not been there. but she was also curious who was still
there staff wise that she recognized.
And I don't think she realized the impact that she had on the,
(42:22):
the nurses and the doctors that were working there.
It was so cool to see some of those nurses that were like, Oh my gosh,
you're, you're all grown up. You were that.
So they knew her as the girl that did yoga in her room while she was going So
with her transplant, they were like, when she was having these really bad days,
(42:43):
she was in her room doing yoga.
And that's what got her through her bad days.
And she left that lasting impression on so many people.
So, you know, this is a two-way street.
You know, we have a great impact on patients, but those patients leave a big
impact on us too. And I hope Bree realizes how much of an impact that she has
(43:06):
left on so many people through her journey.
Thank you, Brian. It is, like I said, you're not just impacting that one life that's saved.
I realize now, like, I mean, you touch so many people, so many lives.
Every day is an opportunity. Every moment is an opportunity to impact somebody positively.
(43:28):
And I really feel like that's my gift. That's a purpose that I take personally
and passionately within my own life, my circle, goal, whoever I touch,
is what impact am I leaving with these people?
That's amazing. Thank you. Yeah. Thank you so much for being impactful for us
today. I'm glad we could do this.
Yeah. What a beautiful way to end generous impact with Bree's impact.
(43:52):
That was a great tie-in. Thanks, Brian. Absolutely.
Wow. I don't know about y'all, but thinking about the young ladies that Bree
met through treatment that didn't make it really got me.
I wish I had known about NMDP before my window to be a donor closed.
I hope you gathered inspiration from Bree's story and will sign up to be a donor if you are able.
(44:16):
And if you aren't, Brian shared a ton of ways to get involved.
Find them at bethematch.org.
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