0:04

Welcome to the Hope Podcast . My name is Jonathan

0:06

James and I'll be your host today . It is

0:08

really fantastic to be here

0:11

to talk about Hope Unmuted and

0:13

in this podcast we're doing a series on

0:15

women with bleeding disorders , and I'm really

0:18

excited to invite one of my

0:20

good friends and one of our board of directors , biven

0:22

Von Allman . Thank you so much for being here

0:25

with me today on the Hope Podcast . Very welcome , happy

0:27

to be here . Yeah , it's great to see you , as

0:29

always , and I should say , dr

0:32

Biven Von Allman , I apologize , but

0:34

you are a physician

0:36

and have been practicing

0:39

as an obstetrician , for I

0:41

won't say you're old , but a long time 30

0:43

years , 30 plus years , yeah

0:45

, and so really excited to talk

0:48

about today , specifically about women

0:50

with bleeding disorders and a little issues about that

0:52

. But I think there's a lot of education

0:54

that needs to happen and things that we're learning and we're

0:57

just trying to move the needle on . How do we advance

0:59

in that space , especially for women living

1:01

with von Willebrand's and maybe even

1:03

other bleeding disorders that just don't

1:06

know that they should be looking into these things . So I'm super

1:08

excited to dive into that topic , but

1:10

I just want to take a few minutes for people to

1:12

get to know you a little bit better , because it's

1:15

just you have such an incredible

1:17

background and story and so tell

1:19

us a little bit about where you're from and

1:21

also just kind of your journey of becoming

1:23

a physician and getting involved in the practice

1:25

that you're in .

1:26

I was originally born in Texas

1:28

and raised in five other states , ended

1:30

up here in Louisiana . I went to

1:33

LSU Medical School . Let's

1:36

see that was many years ago , 1983

1:39

to 1988 . I

1:43

went through residency at Charity Hospital

1:45

and all the charity hospitals from 1980

1:48

. Oh sorry , 19

1:50

. What years did .

1:52

I say so sorry yeah 1988

1:55

to 1992 .

1:57

And then I started in private practice and

1:59

I did obstetrics and gynecology for about

2:01

13 years and then I've been doing GYN

2:03

surgery for the last 30 plus years

2:06

and then retired Wow , so

2:08

yeah .

2:09

Well , I , you know , one of the things that I'm always inspired

2:11

by is your passion and your empathy

2:13

. I think a lot of times , um

2:16

so often , I know , for me I've had

2:18

, I have been a person that

2:20

has had white coat syndrome on more than one occasion

2:22

where I walk in and I just don't

2:24

know . You know , I get all high blood pressure

2:26

and everything else , and so sometimes that's

2:28

a result of you know , sometimes

2:31

you have expert physicians that are

2:33

maybe don't have always the best bedside manner

2:35

, but you are not that person . You're the

2:37

extreme opposite of that , and we have many

2:39

friends that you've helped through the years and , of course , you've helped

2:41

my family as well , and and

2:49

I've just , I've just always been so blown away at how much empathy and willingness to listen and really

2:51

hear what the needs are . I know , when I got to know you , you

2:53

were still working at a uh

2:55

, a hospital that was a nonprofit hospital

2:58

and , um , one of the reasons why you went

3:00

there is because you just cared for people so much . You couldn't

3:02

make a lot more money at a lot of other places . But you wanted

3:04

to really help the people that couldn't get help any

3:07

other way . And tell me a little

3:09

bit about your tenure there . I know that that was a passion

3:11

for you , but you worked on people that really had no insurance

3:13

, they had no ability to pay , they had no , no

3:16

ability . You , you really served the least of these

3:18

really in many ways , right .

3:19

Yes . Well , a lot of them

3:22

basically fell through the cracks , either

3:24

medically

3:27

, socially , economically

3:29

, and always had bigger

3:32

problems than they

3:34

really would like to admit to Just

3:37

learn to deal with it from the

3:39

perspective of bleeding to a point of

3:41

anemia that needed to be transfused

3:44

, sometimes

3:46

four or five times a year , and

3:50

really needed . They needed help and

3:52

the whole purpose was to try to help them out

3:54

. I mean , that's

3:56

why we're in medicine to begin with . Right Is to help

3:58

other people . It's not about

4:19

us .

4:19

So there's a main reason In those types of settings

4:21

and I've been in some of those hospitals and they are

4:23

really not easy to work

4:25

in it's lack of resources

4:28

, lack of staff , lack of medicine

4:31

, sometimes lack of all kinds of things , and so you

4:33

see , lack in every direction and to work in

4:35

that environment . How many years

4:37

were you there ? You were 20 , over 20 years . Yeah

4:40

, yeah , 20 years . And so to work in that kind

4:42

of environment for that long is almost like staying

4:44

in a perpetual sense of residency almost

4:46

in a way , I would expect , because

4:48

you're just Similar . Yeah , you're just working

4:50

in a space that just doesn't have all

4:52

the latest , greatest technology

4:55

.

4:55

Bells and whistles are out there .

4:56

Yeah , you don't have a coag lab that you can run

4:59

down and throw into a centrifuge and get an answer

5:01

right away . You have to wait for everything

5:03

and that's tough a centrifuge and get an answer right

5:05

away . You have to wait for everything and that's tough . But I know that you know working

5:07

with specifically with women with bleeding disorders

5:10

. One of the things we're learning is

5:12

that we hear stories of so

5:14

many people that

5:17

are , you know , I

5:23

mean , sort of a driving portion of that women specifically with bleeding disorders

5:25

is their menstrual cycle . Is can sometimes be one of the first

5:27

indications that there may be something wrong , that

5:29

they didn't get detected , maybe in some

5:31

other form or fashion . If you didn't have a , if

5:34

you didn't have , like , a family history in

5:36

a genetic sense , or you weren't aware of it because

5:38

someone else had gotten diagnosed in your genetic line

5:40

, you you may not have an awareness

5:42

. And one of the things we talk about a lot we just

5:44

, you

5:49

know , have been doing some education for von Willebrand specifically . One of the things

5:51

we learned about is the CDC reports . They estimate of almost

5:53

nearly 3 million people in the United

5:55

States could have von

5:57

Willebrand's disease , but only roughly

5:59

33,000 of those people are

6:01

even identified . I mean , they don't even know

6:04

where the gross majority of those . So that

6:06

tells me that there's a huge gap of

6:08

information that hasn't been . You

6:10

know of people that really need

6:12

to see where these problems are , so one of the things I wanted to kind

6:14

of ask you and I and I think

6:16

about a lot of times as an OB is

6:18

you know what

6:21

is a normal menstrual cycle timeframe

6:23

, cause I , I think we've seen some women that have had

6:25

timeframes all over the map , and and

6:28

so you know a lot of one of the first questions

6:30

that comes up is do you have longer

6:32

than normal ? menstrual cycles yes

6:34

, Well , I think most women are going

6:37

like well , I don't know , I just it's

6:39

my cycle you know like they don't really put that

6:41

two and two together , but since that's such an important

6:43

, maybe anecdotal way for the

6:46

average everyday person or female to be able to kind

6:48

of indicate what

6:50

is a normal time .

6:51

Sure , three days to seven days

6:54

. Anything after seven is really considered abnormal

6:56

. Okay , some women have been having cycles

6:59

for 10 days and two weeks and just been putting

7:01

up with it and thought that

7:03

was normal . Wow yeah

7:07

, anything that is in intermenstrual bleeding between

7:09

cycles is abnormal and

7:11

should be investigated . Anything

7:13

that is heavier than they say five

7:16

tablespoons , which is roughly 80

7:18

milliliters of blood

7:20

in a cycle . Now , most women aren't

7:22

going to measure 80 milliliters

7:25

of blood , so they

7:27

feel that if you're using

7:30

a pad or a tampon every hour

7:32

or you're having to use overprotection , that's

7:34

certainly excessive bleeding . And

7:36

some of those things don't get investigated from

7:38

the perspective of bleeding disorders because

7:40

, being

7:43

an OBGYN , one of the first things we investigate

7:45

is the actual organ that's bleeding the uterus

7:47

. Or we investigate the hormones

7:50

, or we investigate the ovaries , or we

7:52

investigate the lining of the uterus

7:54

. And I was just looking at a differential

7:57

diagnosis for abnormal bleeding and bleeding

8:00

disorders is a tenth down the line of

8:02

a number of 11 or 12 in the differential

8:05

diagnosis , so it's way down

8:07

the line .

8:08

So meaning that a doctor would probably

8:10

, if there was abnormal bleeding , say

8:12

, beyond that seven days or beyond that pad

8:14

per hour , whatever that measurement is we're

8:16

thinking about , if that's something that's

8:18

outside of the norms , they

8:21

would look at those other eight checkpoints before they

8:23

would Correct . And you said bleeding disorders are eight or nine , Eight or nine . Down the line forms they would look at those other eight checkpoints before they would

8:25

Correct . And you said bleeding disorders are eight

8:27

or nine . Eight or nine ?

8:28

down the line .

8:28

So they're going to go through a checklist in their own mind

8:30

as an obstetrician to go and say , well

8:32

, is it this , is it that , is it

8:34

this ? And they've got to basically through process

8:37

of elimination , eliminate eight things before they

8:39

get to a bleeding disorder , correct ?

8:41

Wow , right , in

8:47

other words , that's one of the last things that actually gets looked at , and sometimes it's already

8:49

to a point where it's it's too late

8:51

for them to actually be treatable

8:53

if they've already had an obstetric

8:55

emergency and possibly had a postpartum

8:58

hemorrhage or a surgical emergency

9:00

and possibly hemorrhaged post-operatively

9:02

or on the table .

9:05

I had a treatment center nurse

9:07

many years ago who is

9:10

retired and not

9:13

with us anymore . Actually , she passed away a few years

9:15

ago , but

9:19

she actually told me one time she said , jonathan , because if we ever had realized how

9:21

many people that had extended you know , abnormal

9:24

bleeding as women . What we're

9:26

finding is that we had potentially

9:28

thousands of them that had hysterectomies

9:31

before they were of childbearing

9:33

years because

9:35

they had bleeding challenges

9:38

. And if we would have just known that we could have given

9:40

them a little bit of factor or a little bit

9:42

of fungal-lipidinase protein or a little bit of treatment

9:44

, a little bit of von Willebrand's protein or a little bit of treatment , they could

9:46

have had a full life with all

9:48

of their faculties .

9:54

The education is way behind the process of treatment , which is amazing in 2024

9:56

to see the fact that we still are there .

9:58

We really haven't advanced a

10:00

lot .

10:01

Correct , which is where knowledge is

10:03

empowering to these people

10:05

. Yes , because if they don't have

10:07

and a lot of people

10:09

a thorough history

10:11

includes a family history A lot of people don't

10:13

have an idea of their family

10:16

history , maybe because of social

10:18

situations or maybe because they were adopted

10:20

. But most of the times

10:23

, if we make a diagnosis and somebody has a

10:25

real , strong family history , it points you

10:27

right to that disorder and the

10:29

need for treatment . That doesn't happen

10:31

the majority of the time .

10:33

Even shame , right ? I mean , sometimes

10:36

the limitation is that even within the

10:38

family unit , it's seen

10:40

as something not to talk about , so they just don't

10:42

want to correct . Seen

10:44

as something not to talk about , so

10:46

they just don't want to correct . That's amazing , correct and so this

10:48

. This is part of the reason why I know , as as a person in

10:50

advocating for people with bleeding disorders , this

10:53

is something that makes me really feel like man . We

10:55

got to get the word out because if

10:57

more people knew that

10:59

anything over seven days , anything

11:01

over a pad , an hour , anything like that , maybe

11:03

they would start to ask questions . Because if

11:06

that doctor has to go through eight different things before

11:08

he's going to investigate that , but

11:11

if the patient comes to you and says , hey , I'm

11:13

suspicious because of these reasons

11:15

as a treating physician , would

11:17

that make you want to maybe

11:19

look into that more ?

11:21

Absolutely I would . I would um rule

11:23

out the number one

11:25

through six things as quickly as

11:27

possible and then move on if there was

11:29

not an abnormality . You mentioned the word shame

11:32

. Not only shame , but it's also fear , for

11:34

some people Fear that they might find

11:36

something way worse than just

11:39

a bleeding disorder . They may not know about the bleeding

11:41

disorder , they may think cancer and

11:44

they may not want to come until it's to a point

11:46

where they've had to receive a transfusion . I mean , if

11:48

you see somebody that's been in the hospital and had to receive

11:50

transfusion two

11:53

, three times in a period of five

11:56

, six years , that should be a red light . That

11:58

should go on . Now , the other issue

12:00

is that you know making the referrals to the doctors

12:02

and sometimes those are pretty long waits

12:04

to hematologists , oncologists , and

12:07

they don't want to wait that long or they

12:09

won't wait that long or maybe it's even in another

12:11

city .

12:11

That's really really uh , too

12:13

hard for some of my patients to

12:16

be able to get to , absolutely , absolutely

12:18

it's very interesting

12:20

I really thought about those hurdles being things that

12:22

we have to , yes , consider when we're

12:24

trying to encourage

12:26

people to provide solutions . One of the there's so

12:28

much oh my gosh , we could probably talk for hours

12:31

about just rural health , because so much of

12:33

what work you've done in your career has been

12:35

sort of targeting , bringing

12:37

resources to people in rural settings , and , and

12:39

that's such a huge need . But I

12:42

don't think we can underestimate how

12:44

much just that travel , even even 30

12:46

minutes an hour away , much

12:48

less wait times to get into a specialist all

12:50

those things create hurdles . So

12:52

one of the things that I think is also important is that , and

12:55

one of the things I'm so grateful for you , um

12:58

, getting involved with hope and being a part of our board

13:00

of directors , and we'll we'll dive into some of that

13:02

in a little bit too , but I I wanted to , you

13:04

know , just say that one of the things I'm so grateful for

13:06

is that I do believe that more

13:08

education could be provided to

13:10

obstetricians as a whole that are practicing in many

13:13

different communities . Maybe , maybe there's a way

13:15

we can continue to expand there too . But

13:18

you know in in your experience

13:20

, and I think about you doing so much on the surgical

13:22

side were there ever times that

13:24

you were doing surgery on somebody , that you

13:26

had accessibility and you saw and observed

13:28

concerns of maybe bleeding , that you

13:31

thought , man , maybe I should look into

13:33

this .

13:33

And then you did look into it and found out it was

13:35

von Willebrand's or it was some other kind of bleeding

13:37

problem , Absolutely , there were several

13:39

times I

13:48

never had the ability to be able to follow up with these patients , mainly because

13:51

they wouldn't come back , I mean they would not go on . I

13:54

actually had a lady that came in and gave me a family history before she actually

13:56

had surgery . Thank goodness , because she told stories of her mother and the scenario

13:59

that happened with her in the operating room and

14:02

she almost didn't make it Wow

14:04

. And so we were able to give her factor

14:07

before we did the surgery to help Right

14:09

, and you're well aware of that . With bleeding disorders

14:11

, you know a factor . I mean a lot of people think hemophilia

14:14

. There's no way they're never going to have any , any

14:16

operation because they don't know about

14:18

the factors , they don't know about the ability

14:20

to pre-treat and to be able to make it a safer

14:22

environment for them to have surgery Right

14:25

. And that happened a lot years ago when

14:27

I was in training and right out

14:29

of training .

14:29

Wow , well , truly , I mean , with

14:32

the way you know product

14:34

and availability and all of these things , with

14:36

the right information , bleeding

14:39

disorders is a problem that can be resolved

14:41

. It's something that can be solved , it's not

14:43

something that is so . I

14:45

mean , I think that there's a fear with . I mean , 30

14:48

years ago , 40 years ago , there

14:50

really was such a very , not

14:54

just a lack of knowledge , but there was also a lack of availability of medication

14:57

to be able to address these issues . Now

15:00

we thankfully in the world today

15:02

, especially in first world countries , we pretty

15:04

much have accessibility if we can know

15:07

about these things ahead of time . And so now the biggest challenge

15:09

is actually that knowledge gap . It's actually about

15:11

helping people understand , and

15:14

you know , especially Von Willebrand is one of those things where

15:16

it's 50-50 . Some are men

15:18

, some are women . It's not like

15:20

in hemophilia , for instance . We experienced

15:23

that , as I have severe hemophilia . Historically

15:26

that was considered just a male dominant disease

15:29

.

15:29

We're learning now that's not true either .

15:31

And so so we're trying to understand

15:34

and , as we're learning , I think it's

15:36

important that we get this information out to so many

15:38

people because , really , I think the patients

15:40

in many ways are the people who might be suspicious

15:43

that these are things that they might have trouble

15:45

with . If , if you

15:47

empower yourself with information , going

15:50

to your treatment plan with

15:52

your physician to say , hey , these are things I'm concerned

15:55

about it could like you said , that lady

15:57

that came to you ahead of time it could actually

15:59

provide you the information you need

16:01

to to do some investigation

16:03

in that direction . And I think , as an OB , like we

16:05

, we think very often in in

16:07

hemophilia it's like , well , you just got to go

16:10

to the treatment center and you got to go see a hematologist , but

16:12

, but a lot of times the wait lists are very long . They're

16:14

also very , in very specific places

16:16

that can be difficult to get to , and maybe

16:18

the OB is the place where you might

16:20

be the most common place to discover

16:23

that , especially for women . And

16:25

, uh , I just think that if

16:27

, if we get the message out to patients

16:29

this is an area that if they

16:31

, if they have the , if you're suspicious , and

16:34

if you're listening to this podcast and you're thinking , man , oh

16:37

my gosh , like five tablespoons , eight tablespoons

16:39

of blood . Yeah , that's me every month . Maybe

16:42

it's worth asking some questions , Absolutely

16:44

.

16:45

Absolutely . If there's any doubt , ask questions and

16:47

if the questions are receptive

16:49

, or if the physician

16:51

is receptive to your questions , great

16:54

, get him to push the ball forward . If

16:56

that means a referral , if that means doing some

16:58

blood tests , if they can do it , you have

17:00

to try to make that available . Yeah , if they can do it , you have

17:02

to try to make that available . Now

17:05

, a lot of people will how should I say this

17:07

If they don't know about

17:09

the actual disease process , kind

17:11

of stray away from it because fear that they

17:13

don't know anything about it and

17:15

it's not treatable for them , it's

17:19

not something that they can treat . And years ago , I

17:21

mean when I first was training , I mean hemophilia

17:23

was . I mean basically people thought , well

17:26

, that's just pretty much a death sentence . You

17:29

know they're going to bleed to death if you don't , if

17:31

they have a problem , and that's still I

17:33

mean I hate to say this in some social

17:36

areas probably still thought

17:39

of as the same way Interesting yeah

17:41

.

17:41

Which is totally false . Absolutely , but

17:43

we don't , but they know no better . Interesting , which is totally false , absolutely

17:45

. But we don't , but they know no better . But they know no better , right , in

17:47

medical school , I mean , you know , correct me if I'm wrong , but

17:50

I understand . It's like you're going to be . A

17:52

very small portion of your training is even

17:55

going to explain a definition of these

17:57

things , right ?

17:59

Right , correct , and unless you specialize

18:01

specifically in hematology , hematology

18:04

, oncology , you're not going to get the training

18:06

in that . Because even if

18:08

you do internal medicine , there's so many other

18:10

things that they have to

18:12

know about . I mean , they're going to know a little bit about

18:14

it . They may know more about it than

18:16

, say , a pediatrician

18:20

, they may know more about it than

18:22

a general surgeon , but realistically

18:24

we don't specialize specifically

18:26

in learning about that until it's something

18:28

that we have to deal with .

18:30

Yeah , which is hard . That's

18:32

so interesting . At what point do you think somebody

18:35

might need to reach out

18:37

to a treatment center , would they ? Would they

18:39

go to their OB first and

18:42

ask that question and then their OB refer them to ? Should

18:44

they go to the treatment center right away ? What

18:46

do you think is the best thing ? Because if

18:49

they go to somebody who's not educated

18:51

on that issue , I

18:53

guess my concern and what we've seen happen sometimes

18:56

is sometimes that's just brushed off and

18:59

kind of almost dismissed

19:03

, because everybody doesn't have the luxury of being

19:06

in relationship with somebody as amazing as you , that

19:08

you're going to take that information to heart , you're

19:10

going to investigate , you're going to you , but not

19:12

every physician is like that , and so I guess the question

19:14

is like , if there's

19:16

a dismissal there , should they still keep

19:18

pushing and maybe look for somebody

19:21

in hematology , or should they wait

19:23

on their obstetrician to make that ? Should they go to the PCP

19:25

? I don't know .

19:25

You know what do you recommend ? I would say that they need to get

19:27

a second opinion from another if it's a primary

19:30

care provider , if it's a family practitioner

19:32

or if it's a

19:34

hematologist . That kind of dismissed them and

19:36

they never did any testing on it . If

19:39

you get to that point and second or

19:41

third opinions , you're not getting anywhere . If

19:44

the treatment center is the place where they can

19:46

get evaluated , that

19:48

would be the place to go . That's what I'd recommend . I

19:50

didn't even know about hemophilia treatment centers

19:52

when I was trained .

19:54

And you were ordering medications in

19:56

some occasions for surgeries , even for

19:59

these types of issues , absolutely , but you didn't even know

20:01

to refer to that . No , yeah , and

20:03

that's right here no education , yeah , but you didn't

20:05

even know to refer to that . No , yeah , and that's right here . No

20:07

education for that ? That's amazing . Well

20:09

, there's so much more work to do . I do feel like and I'd be curious

20:11

to know your thoughts on this how important

20:14

is the

20:16

patient themselves , how important

20:19

is their

20:21

determination to

20:23

find answers to

20:26

getting an actual solution ?

20:28

Very If they continue

20:32

to have the problem , it continues to be

20:34

a situation that is inconveniencing

20:37

them . It's very important for them

20:39

to push that ball forward , so good yeah

20:41

, and

20:43

they may run up against egos

20:46

or run up against people that don't want to do

20:48

anything about it . Continue to seek out

20:50

somebody who cares

20:52

.

20:53

That's good . I heard you say one time in one of our conferences

20:56

you said you know ? I said if you don't get

20:58

what you need in a first opinion , get

21:00

a second opinion . If you don't get a second opinion , get a third

21:02

, fourth , fifth , sixth , seventh opinion .

21:04

If that's what it takes , yeah .

21:05

Right , I love that because it's so

21:07

, and I , you know , as

21:09

a person living with a bleeding sore on my end

21:11

, I have been in those situations where

21:13

I felt like I wasn't being heard . I

21:15

felt like I wasn't being listened to . How

21:22

being listened to ? How does somebody stay inspired

21:25

to keep ? Because I feel like that there's a fine line . We talk about this a lot in advocacy is . I think that there's a fine line between being um

21:28

, an activist and

21:31

and and an advocate

21:33

. I think that you can almost lean

21:35

into when you feel like you're not being heard . You can almost lean

21:37

into a place of being adversarial and that's

21:40

not , that's not going to produce anything either

21:42

, no , and so I think there's

21:44

a fine line in that . But you

21:46

know , one of the things that I've wrestled with a lot

21:48

is how to inspire people to

21:50

, to keep to , to stay

21:53

inspired and and

21:55

to keep asking questions , to stay curious

21:57

. You know , right , and and

22:02

you had to face that as a physician too , because you were not trained to be a hematologist

22:04

, correct . So how did you stay inspired in

22:06

your practice , in your career , to be able

22:08

to stay , start saying let me get

22:10

curious about things that I will . Maybe I wasn't

22:12

trained in .

22:13

Right ? Well , many , many of the aspects

22:15

of what the patient will come in with

22:17

when it's not something specifically in

22:19

our specialty . If

22:22

you're not listening , if you're not paying attention

22:24

, you're not going to pick it up , and I

22:26

never forget that . I was told that if you listen

22:28

to the patient , tell

22:31

their history , they'll tell you the

22:33

diagnosis . At least 90% of the time

22:35

, no-transcript

22:50

. We all have things going on at work . We all have things

22:52

going on at home . We all have situations

22:55

going on outside of work , right , and

22:57

if you're not being listened to as a patient

22:59

, then you need to go and find somebody that's

23:01

going to listen to you and going to continue

23:04

to help you along with that , trying

23:06

to make the diagnosis or find out what

23:08

the problem is . Yeah , if you're not satisfied

23:10

, that's a good point . That's a good point

23:12

. And

23:19

it's hard . You can't be how should I say ? They can't be very negative or pushy bitter . They just

23:21

need to try to emphasize the fact that they would like to really

23:23

know why they're having the problem .

23:25

Stay focused on the problem , correct

23:27

Nothing else . Don't get distracted

23:30

by the emotions or the fear , or

23:32

the shame or the which can

23:34

be hard , which can be so hard If you've been dealing

23:36

with it for years and especially when you're suffering , because

23:38

this is not , you know , one

23:41

of the things that I think is so important , and I would think anybody in the nonprofit

23:43

world or you know like , even

23:45

even in the work that you did within nonprofit hospitals

23:47

. But your whole premise is

23:50

, your whole life is really wrapped

23:52

around trying to reduce unnecessary

23:54

suffering and at the same

23:56

time , the rigors of schedules

23:59

and and all of that stuff can put a lot

24:01

of stress , and the same is true for the patient . The patient

24:03

a lot of times can be in a situation where they're they

24:06

had to take hours off of work to even

24:09

show up to an appointment and now it's

24:11

going to take another 30 minutes for you to have a discussion

24:13

or a conversation and sometimes , if you're not getting

24:15

feedback , it can be really , really , really painful to

24:17

keep that momentum . But I

24:20

just want to encourage people who

24:22

may be listening to this thinking oh

24:24

my gosh , like I've noticed this tendency

24:26

and I've noticed this problem , and I almost

24:29

died in childbirth or , you know , I

24:31

almost had these problems where I had a . You know , I was

24:33

very depleted , almost needed a transfusion . Maybe

24:36

you should ask questions . Maybe you should

24:38

keep asking questions and

24:41

not just be satisfied with that . Maybe you did have

24:43

a family history , but there was never

24:45

a label for it . Well , that's okay

24:47

, Keep asking questions

24:50

, because we're all constantly in a state of learning

24:52

. I think sometimes people I talk to so

24:54

many people out in the American public , so much , it's like well

24:56

, technology is so good today and AI

24:58

is so great and we have all these answers

25:01

now it's like , but we still don't know everything . I mean

25:03

, in so many ways it's unfathomable to think

25:05

that we're in a state

25:07

of you know of this

25:09

universe where we can't , we

25:11

really don't know all the answers , but

25:14

we really don't . There's still so

25:16

many things that are unknown yet right

25:18

?

25:18

Yes , I mean , you said 3

25:20

million people with von Willebrand .

25:22

Right .

25:22

Only 33,000 diagnosed Right

25:24

. What percentage of those people that

25:26

have it don't know Right and their family

25:29

doesn't know that they have it Right . And

25:32

people that are even close to the

25:34

bleeding disorder community find

25:36

out . Oh , after I finally started

25:38

learning about bleeding disorders , somebody in my

25:40

family actually had this

25:42

, so their eyes are open to it and

25:45

it's just not something that we pay that much attention

25:47

to , and especially in the medical

25:49

profession . Unless you deal specifically with

25:51

the bleeding disorder community , it's

25:53

not one of the top priorities on the list , like

25:56

I said that differential diagnosis is way

25:58

down there On metarrhagia , the

26:00

heavy bleeding or the long

26:03

prolonged periods . I

26:05

think it's eight or nine on the differential

26:07

diagnosis . On metarrhagia , the heavy periods

26:09

, it's nine or 10 on the differential

26:11

diagnosis out of 11 to 12 diagnoses

26:14

. Almost at the bottom yes , wow

26:16

. Before it's even checked off the list to

26:19

look into or investigate Wow , that

26:21

it's even checked off the list to look into or investigate , correct Wow . That's amazing . And there's so many things happening , whether

26:23

it's postpartum hemorrhage , whether

26:26

it's postpartum hemorrhage to

26:28

death , whether it is intraventricular

26:31

hemorrhage on a baby that's

26:33

born vaginally and

26:35

the mom was never diagnosed with any type of

26:37

bleeding disorder , and yet the child , a male

26:39

child , comes out with hemophilia . Right

26:42

, that could have been prevented , right , you

26:44

know post-operative hemorrhage

26:46

, right , or not making her off

26:48

the table from surgery .

26:50

Right , I would argue that this obviously

26:52

because of the gap again going back to those CDC

26:55

numbers 30,000 that are diagnosed

26:57

.

26:57

Three million .

26:58

Three million that are you 3 million that are anticipated

27:00

? I think , because of that gap , it's

27:02

very logical to me

27:04

to assume that we have

27:06

some , that

27:09

there's many , I mean , according

27:11

to those numbers , there's millions of people in

27:13

the United States living with this problem that literally

27:15

don't know , and so it's

27:17

worthy of us to do this Now . For women

27:20

in this case , obviously , the menstrual

27:22

cycle is happening every month , and that could be

27:24

an indication . But in

27:26

some cases , what if you have other comorbidities

27:29

, like , say , for instance , you have , uh

27:31

, you're not having normal cycles at all ? I

27:33

mean , for instance , I have two daughters both

27:36

both are you know , of the age where they're having

27:38

their menstrual cycles , and they had other

27:40

issues , like PCOS , that prevented them

27:43

from having cycles for a period of time . And

27:45

so that was the first question that was

27:47

asked . Well , when they said

27:49

, well , I haven't had a cycle in three months , or

27:51

something like that , well , oh , well , then you don't have a bleeding disorder

27:53

, which later we found out was not true , they

27:55

actually both had a bleeding disorder , and

28:02

so I think it's easy to talk about the cycle as being a potential problem , but you

28:05

could have that same person that could be in childbirth . You

28:07

brought this up and that's where it raises

28:09

its ugly head , is in the middle of a trauma

28:12

, correct , right , correct . And

28:15

so what do you do ? I mean , if the doctor's not expecting

28:17

it , if the staff is not expecting it , if you're not in a hospital

28:19

that knows how to look for that and

28:22

you don't have enough ? I mean , there's

28:24

far more people at risk of this . I

28:26

think that's why we have potentially millions

28:28

of people that are at risk for this that just

28:30

haven't heard , they just don't know .

28:31

We've just talked about von Willebrand's . What about hemophilia

28:33

? I mean , when I was going through residency

28:36

, it's only males that have hemophilia , that have bleeding

28:38

disorders . Now we know that there's females

28:40

, that's right . So I mean , when

28:42

you get to that point where it's an obstetric

28:45

emergency or a postoperative emergency , that's when the

28:47

fire drill starts , that's right . Even

28:49

if the fire is put out , that

28:51

doesn't mean that you shouldn't

28:53

continue to work up the patient . That

28:55

should be a red flag right there , right ? But

28:57

unfortunately that doesn't happen all the time . Right

28:59

? And if the patient is in that situation

29:02

, they have to continue to inquire .

29:04

Yeah , the patient's got to be in the driver's

29:06

seat . Absolutely , they have to be the one to put

29:08

the pressure on and ask questions from

29:10

every direction . It can't just be , you know

29:13

, I think that there's a tendency for all of us to

29:15

want to . You know , um , I

29:17

know , I know . Part of the white coat syndrome , for instance

29:19

, is something where you're

29:22

fearful when you go into a doctor because you haven't been

29:24

trained in medicine as a novice . I'm

29:27

going in and I wasn't trained to be a doctor

29:29

, so I don't know . There's a lot

29:31

I don't know . You know , at the cellular level

29:33

, I could not tell you how an enzyme interacts with a

29:35

protein , ends up with a . I don't know . You

29:37

know what is a gene compared to

29:39

a red blood cell ? I , you know what

29:41

is a gene compared to a red blood cell ? I , you know , sure , you know . But the point

29:43

is is that we don't really , you

29:45

know , while , while , while

29:48

I think it's easy for us to focus and say we're

29:50

not the experts , that

29:52

individual person is still living with

29:54

their own flesh and blood , their own body

29:56

, I mean a lot

29:58

longer than any researcher will

30:00

be able to see that any investigator , any

30:07

doctor , any treating physician , and that's not a knock on the profession . That's just to say

30:09

that you may have things that you notice within your own life

30:12

that raise their head at variable times

30:14

, like , for instance , my daughter . One time when

30:16

she was very little , she fell

30:18

and she hit her lip

30:20

on the stairs and it busted her lip

30:23

. Well , don't you know the doggone thing

30:25

like bled for like three days

30:27

and we couldn't get it to stop and we even

30:29

asked the question is this , possibly this ? At the time

30:31

, the predominant thinking was not that

30:33

cause girls can't have it . But it

30:36

wasn't because we weren't asking questions

30:38

, but we didn't continue to

30:40

keep the pressure on . And so a

30:42

decade goes by , there's other problems

30:45

and now she has some joint damage

30:47

as a result of not asking those right questions

30:49

. And I can't blame myself entirely

30:51

to say that it's 100 . I can't walk around with the

30:54

shame of that and guilt of that . I've got to be careful to manage

30:56

that emotion in my own heart . But at the

30:58

same time I really can't blame

31:00

the medical physicians that

31:03

we're looking at at the time , either because they didn't

31:05

have the information . But it's incumbent

31:07

upon me as the parent or as the person

31:09

living with that I've got to still keep

31:11

asking questions if I see these trends , because

31:14

I'm looking over decades of my own

31:16

personal life and I

31:18

don't think we should downplay

31:20

that as a non-physician .

31:25

Issue Issue Right , and you live

31:27

with yourself every day . Right , the doctor sees

31:29

you once every year , once every six months

31:31

. Right , if it's an OBGYN

31:33

, they may see them once during their pregnancy

31:35

. See them once a year after then for pap

31:37

smears or annual exams Right , for

31:40

maybe five , ten years . Right

31:42

, if it's a really long time , it could be 20

31:44

. Well , by then you should have an idea . But Well

31:46

, by then you should have an idea . But then you have to remember this

31:48

also , jonathan the things that you've gone through with hemophilia

31:51

bring a tremendous amount of

31:53

pains , burdens

31:56

, battles that you have to deal with , and

31:58

sometimes it's hard for the patient to remain

32:00

focused , to ask the right questions over

32:02

and over and over again because of what's going on in their

32:04

life . So that's really hard

32:06

.

32:10

That is hard , which is why we need organizations like Hope to help encourage , and

32:12

that's one of the things I love about what we do is we

32:14

, we try to do . Moments like this

32:16

, we try to do educational opportunities

32:19

. We try to help empower people because

32:21

, at the end of the day , like it is

32:23

a long , it's a lifelong road . It's not

32:25

just a long road , it's a lifelong

32:27

road and it's one

32:29

that really does . There's lots of ebbs and flows

32:31

and there's lots of things that occur

32:33

over the over decades and decades of a lifetime

32:36

and and very likely you're

32:38

going to get tired You're going to need some encouragement

32:43

that you've

32:45

been such a huge , really

32:48

answer to prayer for me personally as being

32:50

a part of our team , because when

32:52

you came onto the board of directors , we were just

32:54

starting to really step out

32:56

into how can we really educate

33:00

people on this issue of how

33:02

women are impacted and

33:05

try to really make some strategic change in that

33:07

area . Tell me a little bit about

33:09

, like , what drew you to hope , what made you

33:11

want to get involved with hope and and

33:13

and . What is it that you're excited about as

33:15

you look into the future , of what we could do as a , as

33:17

a group and as a team ?

33:19

The heart of hope is really what drew me in

33:21

. I'm just so humbled

33:23

to be part of it , be on the board , because

33:26

when I first initially

33:28

was approached about it , it was like I didn't

33:30

have time to do that . I was busy with other

33:32

things going on in life . Then , when I realized

33:35

what the heart of hope was , it's I

33:37

don't have time not to do that . Y'all are

33:39

here strictly for the patient . You're

33:41

here to help people in crisis . You're here to

33:44

help people in need . You're here to educate people

33:46

. I

33:48

would say at this point in time , you're probably

33:50

pushing the ball forward more with women's

33:52

health than any other organization

33:56

that I know of . From the perspective of bleeding

33:58

disorders , that's

34:04

like number one in my eyes , because

34:06

that's what I take care of . Women

34:09

are awful , awful

34:11

, a lot how

34:14

should I say this ? Underappreciated and

34:17

not treated with the same especially

34:20

racially , some women and

34:22

not treated with the same respect and the same

34:24

amount of interest

34:26

that some other people are treated with

34:28

. So I took care of an awful

34:31

lot of those women and just

34:33

to have them come in and feel like somebody

34:35

was caring about what

34:37

was going on in their life , somebody was listening , somebody

34:40

wanted to help them . That's what

34:42

you guys do all the time , a hundred percent

34:44

. And that's what drew me in . And then

34:46

, when I said , okay , I

34:48

give , I'm going to be a member , I

34:51

sat in here and I thought , why

34:53

am I even here ? Why did they even ask me ? I'm

34:57

not even qualified to do this . Oh my gosh

34:59

.

34:59

But then I realized no , I wasn't qualified

35:01

.

35:01

I was called to do this , wow . And

35:04

as I was called to do this , then he's going

35:06

to give me the qualifications that I

35:08

need . That's so good , so that was the beauty

35:10

of it . And then I just see the just expansion

35:13

of the people that y'all are reaching . Yeah , and

35:15

it's not because you

35:18

want it to be about you , you

35:20

want it to be about hope , you want it to be about

35:22

the people . That's right . That's right .

35:26

That's why we're all here is for others . That's so good . Bevan , oh my gosh , I

35:29

yeah

35:31

, I can't even begin to

35:33

say how grateful I am for your

35:36

involvement , because it

35:38

it's not just a project for us

35:40

. I and I think that that's what's important

35:42

for people to understand is that it's

35:44

not we live this number one

35:46

. I mean I live it personally . You've seen

35:48

so many of the people that we you know , so

35:51

many of our employees , so many of the people that are involved , so

35:53

many of our volunteers . I mean it's like it

35:55

affects us at every , the fabric

35:57

of who we are , not just resources

36:09

and and expanding , you know , the possibilities of treatment

36:11

and all of those things , and really , truly advocacy work for women

36:14

with bleeding disorders is it's not like a trendy

36:16

thing . We're trying to pick up and I think that

36:18

that's something that's unless you're involved

36:20

really deeply , you probably don't know

36:22

that , because some of these things can feel

36:24

like they're a little bit a little bit like

36:26

oh , everybody's talking about , let's just talk about it . You know , and

36:29

I would say that there's a lot of folks out there

36:31

in the bleeding sort of community that really are

36:33

doing a lot , rolling up their sleeves , committing

36:36

to trying to make change , committing , trying to improve

36:38

, which is so heartwarming

36:40

it really is , and so , but for

36:42

hope , it's not something for us that we're just

36:44

trying to like , adopt as like just

36:47

an extra thing that we're doing to us

36:49

. This is central to what we do and

36:52

, uh , we're here for the disenfranchised entirely

36:55

. We're here for the people that don't . We

36:57

want to meet unmet needs . We're not trying to

36:59

duplicate what everybody else has done . We're not trying to just

37:01

jump on a bandwagon . Even this is something

37:03

for years upon years that we continue to

37:05

layer upon layer as we learn . We want

37:07

to pass that information along . You

37:10

said earlier , knowledge is power , like that I

37:12

mean truer words , right , we never spoke , I mean it's

37:14

. It really can be empowering

37:16

when you have the knowledge . And my

37:19

hope is is that people listen to a

37:21

conversation like this or they look at other resources

37:23

and they think about okay , maybe

37:26

, maybe I can get the courage up to ask

37:28

my OB like am I maybe

37:31

above average ? Am I bleeding more than

37:33

normal ? And I hope

37:35

that one day in time I will be able to look

37:37

back and say , oh my gosh , now

37:40

we have 2 million people that are diagnosed

37:42

, not because I want to see just everybody

37:45

have a bleeding disorder . It's kind of like pointing

37:47

to ministry of insurance . You know , you just , you don't really necessarily

37:49

wish it on anyone , but at the same

37:51

time , it's like that knowledge gap

37:54

has got to close , and I think it starts

37:56

with the patient community . At this point , in

37:59

an ideal world , I'd love for everybody

38:01

in every medical school to be educated

38:03

up to the hilt on these things . But you know what ? There's

38:05

thousands of rare diseases I

38:07

talked about . You've heard me say this at a lot of our conferences

38:09

, but it's like it's still amazing to

38:11

me to think that there was , like what ? 7,000

38:13

rare diseases diagnosed . A very good situation

38:15

in the sense that we have a lot of resources that maybe other communities

38:18

don't . So

38:35

we hope to help with this . We

38:37

hope to help with even other rare and ultra rare

38:39

diseases that don't have any resources

38:42

or support . But I want people

38:44

to know that what we're

38:46

hoping to do is really commit to

38:48

this for the long haul . It's not just a project

38:50

. Long haul and not just . It's

38:53

not just a project .

38:54

It's not just a trendy thing . It's something that's central to who we are . That's

38:56

another thing about the heart of hope . It's out to help those who can't help

38:58

themselves , and you're always looking for

39:00

somebody else to help , which

39:03

is just the amazing thing to me , which

39:05

is so humbling to me . I look at y'all

39:07

, especially some of the people that

39:09

I know have hemophilia

39:12

and are getting treatment , and I think to myself

39:14

and they go on every day and continue

39:17

and don't gripe

39:19

about it , don't moan about it , and

39:21

look at our lives , those people who aren't

39:24

affected , and yet we're going to complain about

39:26

something or grumble about something , and I'm thinking

39:28

we have it so good compared

39:30

to y'all , and y'all are just going

39:32

on and on . And I

39:34

think to myself , after 34

39:36

years of doing what I've done , all

39:39

the possible treatments that we've had , whether it's

39:41

hormones , whether it's surgery , whether

39:43

it's aggressive surgery , and

39:46

people are still having these problems . We're

39:49

not curing them . We're not taking care of the root

39:51

issue . We're just taking care of the symptoms

39:53

. We need to get to the root issue , to the

39:55

deeper root of what's going on , to

39:58

actually take care of the patient themselves

40:01

. Because , even if they've had bleeding

40:03

issues and you've taken care of their bleeding

40:05

problems from the perspective of some hormonal

40:08

treatment , or they break through

40:10

and then you've had to do surgery minor surgery , and then

40:12

you've had to do major surgery . What

40:14

happens after the surgery is over ? Are they going to have something

40:17

else going on if they truly have an underlying

40:19

problem ?

40:19

Yes , they will .

40:20

Did we really take care of the root of the problem

40:23

?

40:23

No , that's what we need to get to

40:25

, which is why it's incumbent upon the

40:27

patient population to continue

40:30

to ask the questions Because , honestly , it's

40:32

a point of diminishing returns . You can't expect

40:34

every single doctor you encounter to be the

40:36

most expert at every single thing . I

40:40

don't go to my cardiologist

40:42

to see how well my

40:45

hemophilia is doing .

40:51

There's just too much information that we all know .

40:53

There's no , possibly every person , every specialist

40:55

can know everything , and so

40:57

, um , you know , I do think it's incumbent

40:59

upon us to to educate ourselves

41:02

. What to that end

41:04

? What ? What do you think people

41:06

should do if they want to educate

41:08

themselves ? If they , if they're suspicious of these

41:10

things being potentially probably , for

41:13

instance , men that have von willebrand's

41:15

disease , it's a very common symptom

41:17

that they would have excessive nosebleeds

41:19

. That might be seasonal . They might be seasonal

41:22

, but they , they bleed more than normal from

41:24

a nosebleed . Sometimes people have bleeding in their gums

41:27

and their teeth . They have , they

41:29

have bruising . That occurs , they just

41:31

don't Unusual bruising right

41:33

. It feels like it's more common

41:36

than it would be maybe their friends , Right ? What

41:38

would you do to encourage maybe a guy

41:40

or a girl who might suspect that

41:43

there's something going on here that might be different

41:45

? How would you encourage them to get to

41:47

the education ? Because

41:50

I think that that's that's still a question mark out there . I mean , we're

41:52

trying to do what we can with maybe online stuff , but what

41:54

do ?

41:54

they do . Well , I mean , as we all

41:56

know , the internet's right there at our fingertips . I

41:58

mean people go to that all the time Search

42:01

out somebody that has a problem or

42:03

has the problem , or a

42:05

organization that deals with those specific

42:08

type of problems , and one

42:10

like Hope . They're more than willing

42:13

to help the patient and educate

42:15

the patient and give them information and

42:17

direct them in the right direction . That's

42:19

right , which is another super positive

42:22

thing about the heart of Hope yeah , you're always willing

42:24

to help people out . Yeah , in

42:26

more ways than just the ones that are

42:28

in crisis , people that are inquiring

42:30

. That's so true . That's what this is all about .

42:32

That's so true . We

42:36

were talking about this earlier about how we have a staff member

42:38

here who came to work and

42:40

really they came with a deep

42:43

amount of professional background and all kinds of things

42:45

and they got here and they started to get . They

42:48

had known that some of their family members

42:50

might , if they ever had to

42:52

have a surgery or some kind of extreme thing happened , they

42:54

might need something , and they

42:56

weren't . They didn't know what it was , and then

42:59

they started to learn through some of our online things

43:01

and they were like wait a minute . They went back

43:03

to their family members and said , what

43:05

do you have again ? And one of them knew and one of

43:07

them didn't know . And

43:10

and one of them didn't know and one of them started to . Well , it turns out she's a female

43:12

that has Von Willebrands and she

43:14

just had to have a double knee replacement and

43:17

she's only in her late

43:19

forties , early fifties and

43:22

you know there's a suspicion that

43:24

maybe if she had had treatment for him . Well

43:27

, this employee started handing

43:29

them the information he was learning and he's

43:31

like , oh my gosh , like how

43:33

, why didn't we know all this before ? But it took him

43:35

working , you know , in the environment to even realize

43:38

oh my gosh like , and

43:40

that's the piece that I hope to solve someday . Like I

43:42

, you know , as an organization , one

43:44

of the things that we've had a passion for , obviously , is

43:47

serving the people that know what

43:49

the problem is , but I never

43:51

actually , you know , I've now been

43:53

, you know , working as an employee

43:55

of Hope . I mean , my wife and I started the organization

43:57

15 years ago , but as an employee , I've

44:00

been here for 11 years , I think we

44:02

just said and so in

44:05

that timeframe , I never imagined

44:07

that we would be doing campaigns and trying

44:10

to reach out to maybe mass

44:12

population , not just these

44:14

small niche communities , and

44:17

it is amazing to think about

44:20

the future of what we could be doing

44:22

. We need an army of people to get educated

44:24

so that we can infiltrate every

44:26

community . We can infiltrate every , and

44:28

the internet's a good place to start . People can

44:30

join an online educational

44:33

session and listen in . We

44:35

just did this Von Willebrand's conference . We're

44:37

planning on doing that for every year going forward . But

44:40

those online things you could invite a neighbor

44:42

, you can invite a friend , you can invite somebody that said

44:44

you know , I think maybe there's something

44:46

I know about that . Well , maybe invite them . You know , I think maybe there's something I know about

44:48

that . Well , maybe invite them . You know , get involved . You know we have our hope conference

44:51

coming up in the fall super exciting . We have a few scholarships

44:54

that people can get to travel . But even if we can't , you

45:00

can access that same conference online . Maybe they can come and listen to some of those sessions

45:03

to understand , to get some of the language , to get some of the learning about , maybe

45:05

, what questions to bring to their doctor or

45:07

their clinical setting . My daughter , my

45:10

oldest daughter , actually got her first pretty

45:14

educated on how this stuff works , and it was genetic

45:18

. So we're looking for the same thing . We'd

45:20

gone to specialists and it's probably

45:22

not whatever , but nobody had really drawn blood

45:24

work . Well , I was able to get my PCP

45:26

, my family doctor , our

45:29

primary care physician , to actually pull the

45:31

blood work and they were like , yeah , sure , we'll pull

45:33

it . We can't maybe diagnose it necessarily or provide

45:35

treatment . We can actually look into it . Well

45:38

, sure enough , there was the answer

45:40

right there and she's like , oh , this is definitely what that

45:42

is . So then we had information to

45:44

take to the specialist and say , oh , this

45:46

is what . And

45:54

then it was a different story after that . But I just think that's what

45:56

I'm excited about , about what you and I get to do as as part of this really movement

45:58

in a way is to really bring not only bring people together to

46:00

learn and grow and support each other . That's super

46:02

huge . I , I , I you can never

46:05

underestimate how powerful that is but

46:07

also the possibilities that there's millions

46:10

of people out there that need to hear about this , that

46:12

are suffering , and some of them I think

46:14

some of them are having early mortality . Some

46:16

of them are dying as a result

46:18

of this lack of knowledge .

46:19

Suffering silently because they've never

46:22

actually known about it .

46:24

Right , and it's

46:26

exciting because the needle is starting to move a little

46:28

bit . We just recently got one of the medications

46:31

for specifically for vulnerable brains which talked

46:33

a lot about , just got an indication

46:35

for preventative treatment . That's not been something

46:37

that's really been on the market and so

46:39

that's exciting . There's some movement there . We know that

46:42

there's some new studies coming out , new therapies

46:44

coming out down the line . It is really

46:46

exciting to think what could be solutions in

46:48

the future . But I certainly hope anybody

46:50

listening to this podcast today I hope you've been inspired

46:52

and energized and excited about the

46:54

possibilities and what

46:57

you could learn and I know we're

46:59

preaching to the choir here because if you're listening to this , you

47:01

obviously are already self-learning , which

47:03

is great , but we want you to get involved

47:05

. We're real people with an office that we take

47:07

calls every day , all day , and we want to make certain

47:09

that people can call us and just reach out

47:11

, pick up the phone . I mean , you know , if you

47:13

just call the main 800 number , you're going to get somebody

47:15

that's a caring , thoughtful

47:20

person that's going to want to hear your story out and listen , and we might

47:22

very well have some tools that we can send you or empower you with that can help you

47:24

to have some of those important conversations and

47:27

so hard of hope , yeah , so

47:29

true . So , biven , thank you so much

47:31

for for being

47:34

invested , because I know every minute

47:36

that you spend away from family and your

47:38

career and everything else I know is a sacrifice

47:41

, and and and I just want to say

47:43

thank you so much for being invested with us as a

47:45

board member to help guide us down this journey

47:47

, to learn how to , how to explore and expand

47:49

our reach , but also thank you for

47:51

taking the time today to just invest in

47:53

this moment my pleasure . Thanks for having me . Well

47:56

, thank you so much for listening to this podcast . I hope

47:58

it was encouraging to you . You can find more resources

48:01

on hope-charitiesorg

48:03

and we would love , love , love for you

48:05

to get involved in one of those events we talked about . But

48:08

also , we're really excited about the future

48:10

of what we can do together , and so we need you

48:12

to get invested with what

48:14

we're doing here , because there's so much more to

48:17

do and we can only do it with your help . So , thanks so much for

48:19

listening to this podcast . We hope to see you on

48:21

the next one . Take care .