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I was three months pregnant with twins

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when my husband Ross and I[br]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[br]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[br]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[br]that we were about to face.

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The doctor explained[br]that one of our twins, Thomas,

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had a fatal birth defect[br]called anencephaly.

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This means that his brain[br]was not formed correctly

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because part of his skull was missing.

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Babies with this diagnosis[br]typically die in utero

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

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But the other twin, Callum,

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appeared to be healthy,[br]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[br]how this could have possibly happened,

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a selective reduction was mentioned,

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and while this procedure[br]was not impossible,

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

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so we decided to carry[br]the pregnancy to term.

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

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and I had to find a way to manage[br]my blood pressure and my stress.

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And it felt like having a roommate[br]point a loaded gun at you for six months.

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But I stared down[br]the barrel of that gun for so long

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that I saw a light[br]at the end of the tunnel.

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

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I wanted to find a way[br]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,[br]eye and tissue donation.

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She connected with our local[br]organ-procurement organization,

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the Washington Regional[br]Transplant Community.

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WRTC explained to me

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

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and I was shocked:

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I didn't even know[br]you could be rejected for that.

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But they said that he would be[br]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[br]to unlock a medical mystery.

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On March 23, 2010,

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the twins were born,[br]and they were both born alive.

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And just like the doctor said,

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Thomas was missing[br]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[br]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[br]National Medical Center.

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

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

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His cord blood would go[br]to Duke University.

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His liver would go to a cell-therapy[br]company called Cytonet in Durham.

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His corneas would go[br]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[br]to the University of Pennsylvania.

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

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including baby Callum,

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and we basically[br]closed this chapter in our lives.

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But I did find myself wondering,[br]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[br]to a grief retreat,

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and we met about[br]15 other grieving families

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

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Some of them had even received letters

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from the people who received[br]their loved one's organs,

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saying thank you.

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I learned that they[br]could even meet each other

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if they'd both sign a waiver,

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almost like an open adoption.

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And I was so excited,[br]I thought maybe I could write a letter

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or I could get a letter[br]and learn about what happened.

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But I was disappointed to learn

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that this process only exists[br]for people who donate for transplant.

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So I was jealous.[br]I had transplant envy, I guess.

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(Laughter)

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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[br]why they requested infant retinas

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in March of 2010,

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and I asked if my family[br]could visit their lab.

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I emailed it to the eye bank[br]that arranged the donation,

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the Old Dominion Eye Foundation,

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

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They said that they had[br]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,[br]and they would deliver it.

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Two days later, I got a response

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from Dr. Arupa Ganguly[br]of the University of Pennsylvania.

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She thanked me for the donation,

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and she explained[br]that she is studying retinoblastoma,

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which is a deadly cancer of the retina

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that affects children[br]under the age of five,

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and she said that yes,[br]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

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was that she couldn't possibly[br]imagine how we felt,

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and that Thomas had given[br]the ultimate sacrifice,

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and that she seemed[br]to feel indebted to us.

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So I said, "Nothing against your study,

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but we didn't actually pick it.

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We donated to the system,[br]and the system chose your study.

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I said, "And second of all,[br]bad things happen to children every day,

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and if you didn't want these retinas,

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they would probably[br]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[br]a new layer of meaning.

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So, never feel guilty[br]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[br]for this tissue six years earlier

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with the National Disease[br]Research Interchange.

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She got only one sample of tissue[br]that fit her criteria,

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and it was Thomas's.

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

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

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

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and a few weeks later,[br]we received this T-shirt in the mail.

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A few months later, Ross, Callum[br]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[br]not to feel guilty, that it was a relief,

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

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She also explained that Thomas[br]had a secret code name.

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The same way Henrietta Lacks[br]is called HeLa,

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Thomas was called RES 360.

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RES means research,

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and 360 means he was the 360th specimen

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over the course of about 10 years.

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She also shared with us a unique document,

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and it was the shipping label

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that sent his retinas[br]from DC to Philadelphia.

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This shipping label[br]is like an heirloom to us now.

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

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

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to try to inactivate the gene[br]that causes tumor formation,

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and she even showed us some results[br]that were based on RES 360.

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Then she took us to the freezer

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and she showed us the two samples[br]that she still has

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that are still labeled RES 360.

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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[br]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[br]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[br]simple messages today.

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

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I know I didn't.[br]I think I'm a normal person.

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But I did it.

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It was a good experience,[br]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[br]with human tissue

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and you wonder about the donor[br]and about the family,

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write them a letter.

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Tell them you received it,[br]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 may be[br]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[br]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's story

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is that we ended up visiting[br]all four facilities

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that received Thomas's donations.

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And we met amazing people[br]doing inspiring work.

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The way I see it now[br]is that Thomas got into Harvard,

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Duke and Penn --

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(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[br]in order to do their job.

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And a life that once seemed[br]brief and insignificant

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revealed itself to be vital,[br]everlasting and relevant.

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

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Thank you.

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(Applause)