WEBVTT

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I was three months pregnant with twins

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when my husband Ross and I
went to my second sonogram.

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I was 35 years old at the time,

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and I knew that that meant
we had a higher risk

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of having a child with a birth defect,

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so Ross and I researched
the standard birth defects,

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and we felt reasonably prepared.

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Well, nothing would have prepared us

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for the bizarre diagnosis
that we were about to face.

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The doctor explained
that one of our twins, Thomas,

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had a fatal birth defect
called anencephaly.

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This means that his brain
was not formed correctly

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because part of his skull was missing.

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Babies with this diagnosis
typically die in utero

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or within a few minutes, hours,
or days of being born.

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But the other twin, Callum,

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appeared to be healthy
as far as the doctor could tell,

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and these twins were identical,

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genetically identical.

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So after a lot of questions about
how this could have possibly happened,

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a selective reduction was mentioned,

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and while this procedure
was not impossible,

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it posed some unique risks
for the healthy twin and for me,

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so we decided to carry the pregnancy

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to term.

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So there I was, three months pregnant
with two trimesters ahead of me

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and I had to find a way

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to manage my blood pressure and my stress.

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And it felt like having a roommate

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point a loaded gun at you for six months.

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But I stared down the barrel of that gun

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for so long that I saw a light

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at the end of the tunnel.

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While there was nothing we could do
to prevent the tragedy,

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I wanted to find a way
for Thomas's brief life

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to have some kind of positive impact.

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So I asked my nurse about organ,
eye, and tissue donation.

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She connected with my local
organ procurement organization,

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the Washington Regional
Transplant Community.

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WRTC explained to me

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that Thomas would probably be too small
at birth to donate for transplant,

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and I was shocked: I didn't even know
you could be rejected for that.

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But they said that he would be
a good candidate to donate for research.

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This helped me see Thomas in a new light.

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As opposed to just a victim of a disease,

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I started to see him as a possible key
to unlock a medical mystery.

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On March 23, 2010,

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the twins were born
and they were both born alive.

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And just like the doctor said,

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Thomas was missing
the top part of his skull,

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but he could nurse,

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drink from a bottle,

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cuddle and grab our fingers
like a normal baby,

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and he slept in our arms.

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After six days, Thomas died
in Ross's arms

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surrounded by our family.

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We called WRTC, who sent a van to our home

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and brought him to Children's
National Medical Center.

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A few hours later, we got a call to say
that the recovery was a success,

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and Thomas's donations would be going
to four different places.

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His cord blood would go
to Duke University.

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His liver would go to a cell therapy
company called Cytonet in Durham.

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His corneas would go
to Schepens Eye Research Institute,

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which is part of Harvard Medical School,

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and his retinas would go
to the University of Pennsylvania.

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A few days later, we had a funeral
with our immediate family,

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including baby Callum,

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and we basically closed this chapter

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in our lives.

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But I did find myself wondering,
what's happening now?

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What are the researchers learning?

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And was it even worthwhile to donate?

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WRTC invited Ross and I
to a grief retreat,

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and we met about
15 other grieving families

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who had donated their loved one's
organs for transplant.

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Some of them had even received letters

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from the people who received
their loved one's organs

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saying thank you.

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I learned that they
could even meet each other

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if they both sign a waiver,

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almost like an open adoption.

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And I was so excited. I thought
maybe I could write a letter

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or maybe I could get a letter
and learn about what happened.

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But I was disappointed to learn
that this process only exists

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for people who donate for transplant.

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So I was jealous:
I had transplant envy, I guess.

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But over the years that followed,

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I learned a lot more about donation,

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and I even got a job in the field.

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And I came up with an idea.

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I wrote a letter that started out,

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"Dear Researcher."

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I explained who I was,

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and I asked if they could tell me
why they requested infant retinas

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in March of 2010,

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and I asked if my family
could visit their lab.

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I emailed it to the eye bank
that arranged the donation,

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the Old Dominion Eye Foundation,

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and asked if they could
send it to the right person.

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They said that they had
never done this before,

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and they couldn't guarantee a response,

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but they wouldn't be an obstacle
and they would deliver it.

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Two days later, I got a response

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from Dr. Arupa Ganguly
of the University of Pennsylvania.

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She thanked me for the donation,
and she explained that she is studying

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retinoblastoma,

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which is a deadly cancer of the retina
that affects children

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under the age of five,

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and she said that yes,
we were invited to visit her lab.

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So next we talked on the phone,

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and one of the first things
she said to me was that

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she couldn't possibly imagine how we felt,

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and that Thomas had given
the ultimate sacrifice,

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and that she seemed
to feel indebted to us.

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So I said, "Um,
nothing against your study,

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but we didn't actually pick it.

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We donated to the system,
and the system chose your study."

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I said, "And second of all,
bad things happen to children

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every day,

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and if you didn't want these retinas,

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they would probably
be buried in the ground right now.

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So to be able to participate in your study

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gives Thomas's life a new
layer of meaning.

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So never feel guilty
about using this tissue."

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Next she explained to me how rare it was.

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She had placed a request for this tissue

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six years earlier

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with the National Disease
Research Interchange.

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She got only one sample of tissue
that fit her criteria and it was Thomas's.

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Next we arranged a date for me
to come visit the lab,

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and we chose March 23, 2015,
which was the twins' fifth birthday.

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After we hung up, I emailed her
some pictures of Thomas and Callum,

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and a few weeks later we received
this t-shirt in the mail.

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A few months later, Ross, Callum,
and I piled in the car

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and we went for a road trip.

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We met Arupa and her staff,

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and Arupa said that when I told her
not to feel guilty that it was a relief,

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and that she hadn't seen it
from our perspective.

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She also explained that Thomas
had a secret code name.

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The same way Henrietta Lacks
is called HeLa,

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Thomas was called RES360.

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RES means research,
and 360 means he was

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the 360th specimen

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over the course of about 10 years.

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She also shared with us

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a unique document,

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and it was the shipping label

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that sent his retinas
from DC to Philadelphia.

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This shipping label is like
an heirloom to us now.

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It's the same way that a military medal
or a wedding certificate might be.

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Arupa also explained that she
is using Thomas's retina and his RNA

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to try to inactivate the gene
that causes tumor formation,

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and she even showed us some results
that were based on RES360.

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Then she took us to the freezer

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and she showed us the two samples
that she still has

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that are still labeled RES360.

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There's two little ones left.

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She said she saved it

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because she doesn't know
when she might get more.

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After this we went to the conference room

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and we relaxed and we had lunch together,

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and the lab staff presented Callum
with a birthday gift.

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It was a child's lab kit.

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And they also offered him an internship.

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(Laughter)

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So in closing, I have two
simple messages today.

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One is that most of us probably don't
think about donating to research.

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I know I didn't.
I think I'm a normal person.

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But I did it. It was a good experience,
and I recommend it,

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and it brought my family a lot of peace.

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And second is if you work
with human tissue

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and you wonder about the donor
and you wonder about the family,

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write them a letter.

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Tell them you received it,
tell them what you're working on,

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and invite them to visit your lab,

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because that visit might be
even more gratifying for you

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than it is for them.

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And I'd also like to ask you a favor.

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If you're ever successful in arranging
one of these visits,

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please tell me about it.

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The other part of my family story
is that we ended up visiting

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all four facilities that received
Thomas's donations,

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and we met amazing people

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doing inspiring work.

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The way I see it now is that

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Thomas got into Harvard,

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Duke, and Penn -- (Laughter) --

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and he has a job at Cytonet,

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and he has colleagues
and he has coworkers

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who are in the top of their fields,

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and they need him
in order to do their job.

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And a life that once seemed
brief and insignificant

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revealed itself

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to be vital, everlasting, and relevant.

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And I only hope that my life
can be as relevant.

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Thank you.

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(Applause)