ForeverMissed
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Holbrook's life recognized by The New York Times (visit link):
http://nyti.ms/1REQzjE

Standford University will host a celebration of Holbrook’s life and career
Sunday, May 22nd
4:00 – 7:00PM
Frances C. Arrillaga Alumni Center
326 Galvez St, Stanford, CA 94305

A celebration of Holbrook’s life was hosted on Friday, March 11, 2016. Here is a loving video tribute that was shared that evening.

https://www.youtube.com/watch?v=Lt1MyLOBkDQ&feature=youtu.be

Personal Tributes
At the bottom of this page, you are invited to submit your personal tribute to Holbook.  Please scroll down and enter your rememberances in the "Leave A Tribute" Section.

Condolences

To share your thoughts and memories with Holbrook’s family, please send your condolences to:

His mother
Ms. Marylou Kidd
526 Route 507
Paupack, PA 18451

His father
Dr. Alan Kohrt
6312 Forest Park Drive
Signal Mountain, TN 37377 

Donations

In lieu of flowers, please consider making a donation in Holbrook’s memory to the Holbrook Kidd Kohrt Cancer Immunotherapy Fund at Anticancerfund.org

U.S.-based donors can support the fund in a tax-efficient way through a contribution to the King Baudouin Foundation United States (KBFUS). Because KBFUS is a public charity, within the meaning of Sections 501(c)(3) and 509(a)(1) of the IRS, donors may claim the maximum tax benefits allowed by U.S. law for their contributions. If you wish to support Holbrook's legacy, here is how to proceed:

Credit Card Donations: Go to www.kbfus.org, click on the ‘Donate Now’ button and select “Anticancer Fund (BE)” under ‘Giving Option 1: Nonprofit Partners Overseas’.

Check Donations: Write your check to KBFUS, write “Anticancer Fund” in the memo section of the check, and send it to KBFUS, 10 Rockefeller Plaza, 16th Floor, New York, NY 10020.

Wire Transfers / Other property: Contact KBFUS at: email info@kbfus.org, phone (212) 713-7660.

Donations in Holbrook’s memory can also be made to the following organizations:

Children’s Hospital Foundation: please contact Julie Taylor at Julie.taylor@Erlanger.org

Stanford University: Please contact Dr. Ron Levy at levy@stanford.edu

February 24, 2023
February 24, 2023
Thinking about you a bit more than usual today - You once said: ...realize how important our own family, those defined not just by DNA, but by life experiences, by memories, truly are. thank you for being part of my life. You were that family, however brief. Miss you everyday !
Ben
December 14, 2022
December 14, 2022
Brook came up in conversation yesterday when talking about hiring a chief medical officer for a new company I am working on, I said"we will use consultants unless a Holbrook shows up then we must hire that person#!.  Then went to dinner last night with friends, ordered a Gibson, was asked what kind of Gin i chose Hendricks. A friend ordered shrimp cocktail for the table. Must have been prophetic on the eve of this birthday.  You are gone but never forgotten.
February 24, 2022
February 24, 2022
I remember the bouquets of flowers you would send. Your gesture was more than thoughtful, it was grandiose! The person receiving them felt larger than life and seen for who they really were... that was your gift, to make everyone feel seen. Sending you love and light
February 24, 2022
February 24, 2022
The world has truly lost someone sensational! I still have you in my contacts, can’t find it in my heart to delete! Even in death your still doing good for the world with your fund raising. Happy Birthday to a one-of-a-kind human being. You are forever missed!
February 24, 2022
February 24, 2022
I get a seafood delivery each week, today I get a lb of jumbo shrimp, will have that and and toast to you tonight my friend.
December 15, 2021
December 15, 2021
You made us all feel heard, seen, and recognized. 

Maybe, we all thought we were “the special one” - THAT IS YOUR GIFT ❤️
December 14, 2021
December 14, 2021
To this day, whenever i have Shrimp, Gin, talk about the latest treatments for hemophilia and most importantly, wishing I had you as part of my new company, I think of you my friend. #gonebutneverforgotten
February 24, 2021
February 24, 2021
Holbrook - how many times in the past year have I thought to myself "He'd know exactly what to do, how to handle this, how to make it better"

I know I'm not alone in this. Miss you every day.
February 24, 2021
February 24, 2021
Look at the stars
Look how they shine for you
And everything you do
Yeah, they were all yellow
February 24, 2021
February 24, 2021
Tonight, we are young
So let's set the world on fire
We can burn brighter than the sun
December 14, 2020
December 14, 2020
Bud. Walked in the gardens at the hospital today thinking of the conversation we had when you were in London. You are missed. Your example lives on and fuels us. 
November 26, 2020
November 26, 2020
Hey dude, it's been a while. Oh how much I want you to be here now, we would be having the best time in London. Good thing that you're not here to see 2020 though, wowza. I've been following my bliss by the way, like you said. I'm graduating in London this year!! Remember when I was 15 hahaha?? Been thinking about you a lot lately, your last Christmas, with us in Deurle. Not so optimal for you, but honestly I couldn't have asked for anything better than you being there, as a part of our family. Your non-DNA one as you put it.
And oh my mom and dad are heading back to Paris, finally!! You would love the apartment.
Really miss you. But you're there every step of the way. Wouldn't have accomplished anything without your help. Happy Thanksgiving, and almost Birthday and Christmas of course. Love you
B

PS: You should see how crazy the iphones and ipads have gotten man!!
December 15, 2019
December 15, 2019
Happy Bday. Following my bliss, everyday, inspired by you
December 14, 2019
December 14, 2019
Happy Birthday Buddy where ever you are! I planted a Fuji apple tree in my back yard and named Kohrt (that's what I called you in med school). This year it gave the most delicious apples I have ever had in my life! I hope a little bit of you lives on in my tree so I can continue to enjoy your friendship forever!
February 24, 2019
February 24, 2019
At the tandem transplant meeting thinking about you and feeling the weight of your passing... We work harder to do good, but are reminded that life, family, friends and health are equally important. 3 years ago to this day I was jolted to change my priorities, and your anniversary will always be a reminder of those. Man do I miss you.
February 24, 2018
February 24, 2018
Its been 2 years but seems like yesterday that our world changed w your passing. Your name still is mentioned in so many of my endeavors, I and working on new immune-oncology companies and always tell people that to progress drugs the right way you need someone like Holbrook but people like that are so heard to find. Sure wish your were here to help move the needle forward but your spirit is with so many of us in our day to day, that your never really left.
December 26, 2017
December 26, 2017
The Orchid that Holbrook gave me 3 years ago died over the summer.
However I could not remove it as it had brough so many beautiful memories. The anniversary date of Holbrook’s passing this year suddenly the Orchid started to show life and a beautiful flower has over Christmas time flourished - so happy and feeling blessed.
December 14, 2017
December 14, 2017
Happy Birthday Holbrook. I miss you everyday when I read about the latest developments in Cancer Immunotherapy.
December 14, 2017
December 14, 2017
On your birthday today, I remember your generous spirit, your ever-present empathy and kindness, and your contagious zeal to help others. May your soul rest in peace
December 14, 2017
December 14, 2017
I just returned from the ASH conference in Atlanta. That was the conference and the city where I first met you 5 years ago, standing in front of your poster. ‘Hey, I’m Holbrook’ you said. That was the start of an adventure – coming to Stanford and working with you for 2 years. It was one of the most memorable experiences of my life. I am forever grateful for that. I think about you often, and always feel inspired. Happy birthday.
December 14, 2017
December 14, 2017
H! It’s the culmination of so many things this week. I promise not to send a cookie bouquet, as it didn’t go over very well the first time, except for it gave some good laughs between me and you.

We would be solidifying NYE plans this week & while Kaskade came to SF last year and is repeating it again. I just feel the need to do something new and crazy...which is why I’m missing you!!

Tank is still annoying, Jada is moving out, I’m dating this guy who we could nerd out on genetic expression with (kinda like A & better). There’s a pretty good chance I’ll end up at Fort Mason this year, which is what started this whole thing.  Anyway. Writing here, makes you feel closer. Don’t ever doubt that for one day, you’re not forever missed!!

On ya, I was asked to be an Ambassador for the United Nations. That’s for another time. #missyoumyfriend
May 8, 2017
May 8, 2017
Holbrook, thanks for sharing your passion for life, your inquisitiveness for science, your tireless energy, your willingness to forthrightly connect with others regarding matters professional and deeply personal, your persistent juggling of lab, translational, clinical and collaborative research while providing clinical care and kindness and maintaining an enthusiasm for the excitement of every day. We miss you and are grateful for how much you have taught us.
March 25, 2017
March 25, 2017
Holbrook, I'll be applying to residency this year. I never had the chance to fully thank you for your guidance; you were an amazing mentor, one of an entirely different caliber. Miss you.
March 1, 2017
March 1, 2017
Dear Holbrook, I still think of you regularly and remember your positive influence on me and many other people. your life and work are a permanent source of inspiration. Rest in peace.
February 24, 2017
February 24, 2017
Thanks for your friendship. You will always live in my memories and never be forgotten.
December 14, 2016
December 14, 2016
I'll make sure to hoist a glass of gin in honor of your birthday this evening my friend; I miss you always.
Mike
December 14, 2016
December 14, 2016
Last year we celebrated your birthday in London with your dear mother and amongst friends. Miss you dearly.
X
December 14, 2016
December 14, 2016
Dear friend- You are forever missed and your void will always be there. The reminders of your presence in our lives are both painful and heart-warming. Whether it be on the lonely walk from the nearest hotel at ASH, my Amazon account that recently asked me if I wanted to ship you another Christmas tree to the Ham Yard, or the bubbles I carry in my coat pocket, we remember you. You made such an impact on each of us and on the world broadly. You taught us, inspired us, encouraged us, and made us reflect. Through laughing together, playing together, traveling together, and of course working together, we grew. You are missed, but you have made each of us better and stronger. We dearly wish you were here on this day so we could celebrate your life with you! But your spirit lives on with each of us, and today we celebrate your memory and the impact you've had on us. We hope we make you proud as we attempt to fill your void. We know you're shining down on each of us, giving us more strength, but we still dearly wish you were here with us. Thank you for everything. Xoxo
December 14, 2016
December 14, 2016
Even for the little time I knew you, you were an amazing considerate doctor. I have dealt with many doctors in my life but you were one of the finest always attentive,caring and responsive. Someone who truly cared.
You will always be in our prayers and thoughts.
Tilu
May 13, 2016
May 13, 2016
Holbrook - our paper that you worked with us on is soon to be accepted. I feel immensely pleased and honoured to publish this one with you. I only wish you were here to share in that. More importantly, I am indebted to you for making the world of medical research a so much better place. I cant recall a young person in this profession who energized me more. May you rest in peace.
May 6, 2016
May 6, 2016
Hey man I am going back to CCSR tomorrow to start a new collaboration. I will swing by the lab and say hi to everyone. For those of us mediocre researchers that are growing old, the cycle of starting a project, working hard, and wrapping it up with a poster is never-ending. The last poster I made was turned into a double-edged light saber by the boys after the conference. That's about how useful the project was.

But with each new project, there is renewed hope that this one can save someone. Now that you rest and we must carry on, send us some of your inspiration, energy and tenacity. We will always remember and emulate you.
May 3, 2016
May 3, 2016
I continue to think of you every single day, Holbrook. Greatful that you were part of our lives and family these past four years. Birthdays. Holidays, Concerts, the ballet, amazing meals, quiet talks, trying to beat you to the dinner bill! I will cherish the memories.
April 8, 2016
April 8, 2016
We were all very saddened to hear of Holbrook's passing. Holbrook provided great advice and encouragement to our cancer drug discovery company throughout our time working together. We will miss his energy, spirit and scientific enthusiasm.
April 1, 2016
April 1, 2016
To Dr. Kourtney and Ms. Kidd,

There are not enough words to express the sympathy felt of losing a loved one, especially the loss of a child, no matter the age. As a father of four, I can only imagine your pain. Hearing how Dr. Kohrt lived his life in a self sacrificing way and not let his own illness stop his desire to help others is truly inspiring and heart warming. The Bible offers beautiful and encouraging words of comfort that made me think of him and your hope of seeing him again in the future. Isiah 33-24- "No resident will say : "I am sick." immediately came to mind because of his endurance. And Revelation 21:4- " He will wipe out every tear from their eyes and death will be no more, neither will mourning nor outcry nor pain be anymore." came to mind to remind you that your loss is temporary and your hope of seeing him again is real. I hope these words are a comfort to you and even though I have never met your son, his life story has truly touched me, as I'm sure countless others. He has a beautiful legacy and his life is a testament to how wonderful you raised him. Stay strong and keep looking forward to the day when you will again see your boy resting by that happy tree.
March 30, 2016
March 30, 2016
Words can never adequately convey our feelings at this time of sadness to comfort you in the loss of Brook , We are thinking of you and your family. Always leave room in your heart for angels to dance.

Stephanie and all the Zuvic's
March 30, 2016
March 30, 2016
Holbrook Kohrt was a brilliant, kind, witty, and passionate man with a drive and a fire for scientific advancement unlike any I've ever seen. I remember fondly late nights in the Levy Lab with your funky indie electro music blasting while you handle 100x the amount of things I had going on under my hood...Your magnanimous spirit despite the intensity at which you worked and lived, and despite the hardship you endured in life will stand firmly in my mind as a guidepost for how to be cool, loving, and an absolute joy to be around regardless of how high the stakes (from cancer clinical trials to patient care), and regardless of how little sleep you might be running on. You're a true inspiration. Condolences to family, friends, and colleagues. Rest in Peace my man.
March 27, 2016
March 27, 2016
Initially I barely knew Holbrook nor did I have cause to. Traditionally the concierge of a Hotel apartment can be overlooked. We met in the summer of 2015 while I was arranging his London accommodation, he was a sensible chap with an underlying humour which was easily noticeable but more obviously his manors caught my eye; something I value highly which sadly on occasion can be lacking in some.

What started as sharing pleasantries turned into sharing chocolates and eventually a cheeky gin. We met each morning as he passed my desk and each evening as he returned home. We talked, we laughed, we were normal. I have always been prepared to act comfortable in anyone’s company but with Holbrook there was no need, his attitude towards life and people easily afforded me a comfort not readily available with other guests I looked after.

I have no doubt that he was a brilliant man but I knew him only as a kind man who showed a sincere interest in everyone he met and for their happiness and welfare.

I knew he was loved, I saw that each time I met a member of his family or his friends and I know he will be missed.
March 23, 2016
March 23, 2016
Blessed with your friendship, inspired by your advise, I am left in sadness and awe. As a most original thinker and with enormous energy, you dedicated every talent you had to helping others. I mourn your passing but will celebrate your life. Forever.
March 14, 2016
March 14, 2016
Words seem inadequate to express the sadness we feel. Please accept our most heartfelt sympathies for your loss…our thoughts are with you and your family during this difficult time. 
With sincere sympathy,
Shylah, Sonya & Henry (friends of Kendra's)
March 13, 2016
March 13, 2016
David, my husband, met Dr. Khort- and his dog - as a patient in the lymphoma clinic at Stanford. While Dr.Khort was clearly a brilliant scientist, he was also a compassionate and insightful clinician, and he had a great sense of humor. Dr. Khort could quickly and clearly explain the most complex medical issues and treatments with a diagram and a few words. David and Dr Khort became friends and found time to meet outside the clinic. After Dr. Khort had surgery for his leg, David and Dr.Khort would engage in humorous exchanges about meeting their challenges when they met at clinic. They continued these exchanges by e-mail while Dr. Khort was in Europe. David appreciated Dr. Khort's typical straight to the point comments on David's treatments, and David did his best to bring some humor to Dr. Khort's circumstances. David passed away on November 22, 2015. Dr. Khort kindly related to me how David had made him smile. Dr. Khort, as well as David, had previously always made it through extreme symptoms. I was shocked and saddened to learn of Dr. Khort's passing, and more so when I learned that he had finally been able to travel from Europe. Dr. Khort's tenacity in confronting his own medical issues, his continued interest in David's treatment, and his sense of humor were an inspiration to David and great comfort to me. Jean Bordon
March 11, 2016
March 11, 2016
"Hey man", Hey Holbrook,

I love the moments when I meet someone I admire. In few cases they exceed my expectations. You were far above this treshold, now sitting on the stump of the giving tree next to the little boy.

You always reminded me about what's important in this world. More important to give then receive. More important to love life than anything else. At the end we are a sum of our experiences and moments shared with others.

Sad, sad so sad to let you go. Sometimes these make so little sense today. I hope we find some sense some peace some healing with time.

"Always keep the spirit high", I love you, your friend forever.-ydm
March 10, 2016
March 10, 2016
I first met Holbrook when he took a quizical look at my ASCO poster in 2009. I wondered who this guy was, so smart and, surprisingly, a good dresser (it was ASCO after all). 4 months later I really met Holbrook as we sat next to each other for 7 days straight during the ASH CRTI workshop. It was a week of intense exposure - but it only took me a few hours to figure out that Holbrook was in a league of his own. I was floored by everything he had accomplished in such a short amount of time - and we were only fellows!

Over the next few years I grew to admire and be in awe of his continued multi-dimensional growth. He was my "conference friend" - you know, the ones you always catch up with at conferences... but he was more than just that. I saw in him an intensity and motivation that I could only aspire to emulate. I knew he had reached the next echelon when senior faculty at my cancer center started quoting his work as seminal findings. I would always chuckle at the back of the room and say "hey I know that guy!! He's my friend!!" 

As our careers and paths progressed over these short 7 years I saw Holbrook develop multiple interests and collaborations. I envied his jet-setting status. But no matter how much of a rock star he was, he was still supportive of my (in comparison) small strides. 

Holbrook's passing has haunted me and I still kind of don't believe it. He has reminded me not to take health, life or the privilege of work for granted. Reading his life story in full makes this more apparent to me than ever before. 

Holbrook- you will be missed. 
XOXO
March 9, 2016
March 9, 2016
We extend our condolences to Holbrook's friends and family, and all those who had the honour of working alongside him. We are proud to have known and worked with him, and so played a small part in his legacy. Annals of Oncology - Editorial team
March 8, 2016
March 8, 2016
I mainly knew Holbrook as an advisor on developments in immune-oncology. I quickly developed great respect for him both as a person and someone making very real and important benefits to field of medicine and to mankind as a whole. 

Learning of his passing hit me sadness that one would feel with the falling of a military officer in battle. Holbrook was a rare, driven leader in the pursuit of making cancer a chronic condition for millions globally. During Holbrook’s short time with us he accomplished more than many scientists do in a lifetime. The number of people he has inspired cannot be counted and he will never be forgotten. My thoughts are with his family and loved ones.
March 7, 2016
March 7, 2016
Dear Holbrook, I was privileged to have had you in my life the last years. You made me feel confident and at ease during treatment. I could focus on getting better because I could rely on you, 24/7, although you were fighting your own battle. You were an exceptional , yet modest doctor and a warm friend at the same time. A unique combination ! Lots of love, Tine
March 7, 2016
March 7, 2016
Holbrook you will always be my loved and cherished co-founder of OvaCure.org, and we will keep working for your shatp mission to Cure Ovarian Cancer.

You were an outstanding man. The kindest, smartest, hardworking mastermind. Always thinking of helping others, how to cure cancer. Your creative and strategic intelligence was unique and behind so much innovation and has saved so many. Always eager to help. And always ready to find solutions for any problem.

I will miss your brightness, sharp brain, smile, charm and good looks. I will cherish our memories and work for our vision.

My love.

Yours,
Juliane
March 6, 2016
March 6, 2016
Artists and scientists know that creativity thrives under limits. Within his own constrictions, Brook's intelligence and drive and heart fueled his imagination and he created. He created a life, and friendships, and solutions to problems, and discovered new, even more complex problems to challenge himself. We always want more of what makes us happy, of what challenges us and advances us, and so the loss that we feel at Brook's passing is every child's cry of "More!" We wanted more.
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Recent Tributes
February 24, 2023
February 24, 2023
Thinking about you a bit more than usual today - You once said: ...realize how important our own family, those defined not just by DNA, but by life experiences, by memories, truly are. thank you for being part of my life. You were that family, however brief. Miss you everyday !
Ben
December 14, 2022
December 14, 2022
Brook came up in conversation yesterday when talking about hiring a chief medical officer for a new company I am working on, I said"we will use consultants unless a Holbrook shows up then we must hire that person#!.  Then went to dinner last night with friends, ordered a Gibson, was asked what kind of Gin i chose Hendricks. A friend ordered shrimp cocktail for the table. Must have been prophetic on the eve of this birthday.  You are gone but never forgotten.
Recent stories

Holbrook

February 25, 2017

I love to hear your voice, Holbrook.
(slides and audio from Holbrook Tribute at SITC 2016)

/dan 

A Chattanooga children's doctor mourns the loss of his own child

March 23, 2016

As seen in the Chattanooga Times Free Press, March 21, 2016, by Steve Johnson

http://www.timesfreepress.com/news/local/story/2016/mar/21/childrens-doctor-mourns-loss-own-child/356292/

"I believe people who go into pediatrics have a calling and not a job," Dr. Alan Kohrt said as he stared out the window of his office off Third Street.

Pediatricians treat children, and most children have a long future ahead of them, he said.

"We don't have as many who die, fortunately, but the ones who do, it's that loss of potential — who could that child have become?"

Kohrt is not just any Chattanooga pediatrician, nor is the child he is thinking about just any child.

He has worked all of his professional life as a children's doctor, most recently for seven years as chief medical officer at Children's Hospital at Erlanger and chairman of the pediatrics department at the University of Tennessee College of Medicine Chattanooga.

But for 38 years, he had his own sick child, Brook, who was born with hemophilia, a rare disease in which the blood refuses to clot. For someone with hemophilia, every minor cut or bruise can be life-threatening.

When you have an often-fatal disease, "you don't make assumptions about your life, that you will live a long time," said Kohrt, a soft-spoken man who often pauses to choose just the right word. "For Brook, especially as he got older, death was sort of his constant companion."

Top of his class in high school and college, Brook Kohrt graduated from Stanford Medical School and became one of the leading cancer researchers in the world, touted by his peers and profiled in The New York Times.

His specialty was the cutting edge of cancer studies — finding ways to stimulate the body's immune system to fight the tumors that threatened to overwhelm it.

And when his illness threatened his own life, Brook used his skill to craft his own treatment, a custom drug he hoped would overpower his body's own antibodies that were rejecting the blood-clotting factor that kept him from bleeding to death.

But he failed, and his father had no way to save his child. And so on this March day, Alan Kohrt is grieving.

Hemophilia is a rare illness. Its victims are almost always men, and it strikes only one in 5,000 male births, said Dr. Jennifer Keates, a specialist in cancers of the blood in children at Children's Hospital at Erlanger. It is caused by a missing gene that should produce a coagulant that causes blood to clot and stop the bleeding.

It has been called the "royal disease" because Britain's Queen Victoria passed it on to at least three of her children who, in turn, intermarried with other royalty and spread it to Russia, Germany and Spain. It caused the deaths of several royals who were involved in what normally would have been minor auto accidents.

While the threat from cuts is obvious, bleeding in the joints can be crippling.

"One of the common things that happens with severe hemophiliacs is that they often develop a joint that bleeds spontaneously," Keates said.

The worst threat is bleeding in the brain, difficult to stop and often unnoticed until it is too late.

Hemophilia ranges from mild to severe. Mild hemophilia is almost a chronic disease, with life expectancy near normal. But severe hemophilia is often fatal before adulthood if not constantly monitored.

Alan Kohrt can still feel the shock when he and his wife heard the news that Brook's hemophilia was severe.

"I can remember hearing the diagnosis for the first time; it just totally changes your life," he said.

From the beginning, there were problems.

Brook suffered his first bleed, in an elbow, when he was 2 or 3 months old. When his parents took him to a hospital, a social worker at first accused his mother of child abuse because there seemed to be no other explanation in such a young child.

The Kohrts lived in rural Pennsylvania, many miles from the nearest hospital, so Alan Kohrt became his son's doctor, injecting him regularly with Factor 8, the blood-clotting agent his body was not producing.

"If you have ever put an IV in your own kid," he said, "it became pretty ominous."

They took all of the normal precautions — Brook wore a helmet to school and occasionally used an elbow or knee brace. Still, because of bleeding in his joints, he needed surgery on a knee, an ankle and a shoulder as a child.

But the greatest threat came from the medicine he was taking.

A new, concentrated form of the blood clotting factor was introduced that gave hemophiliacs the ability to inject themselves with the drug at home.

"The big pot from which it was taken was a pot combining plasma from tens of thousands of donors," said Dr. Alan Cohen, former head of pediatrics at Children's Hospital in Philadelphia and the doctor who treated Brook at the time. "If you had any contamination in any of the blood, when you put 10,000 or 20,000 donors in the pot, you would contaminate all of the vials."

And that is exactly what happened, first with Hepatitis B and C and then with HIV, which was not even identified until 1981. Nationally, 90 percent of all severe hemophiliacs contracted HIV, including Ryan White, whose case highlighted the AIDS epidemic and the importance of blood screening. Many of them died, including White.

"It absolutely wiped out a generation of men and boys with severe hemophilia," Cohen said.

Brook went to a summer camp for hemophiliacs.

"As kids in other parts of Pennsylvania developed HIV, the number of kids at camp every year decreased," his dad remembered. Fortunately, doctors at Children's Hospital were among the first in the U.S. to realize HIV was spreading through the blood supply, and Brook's parents went back to using the older, nonconcentrated form of Factor 8.

"That was a scary time," Kohrt remembered. "[Brook] was very fortunate."

Brook did not cope with his disease by retreating from the world. Instead, he developed a drive to make something of his life, no matter how long it lasted.

"I've never known anybody in my life as focused as Brook," Kohrt said. "My father was stubborn, and I'm stubborn, but Brook was tenacious on what he was trying to achieve."

Very early on, that was clearly going to be medical school. He was 10, his dad said. That was not unusual. His older brother would become a physician and all of his siblings ended up with graduate degrees. But Brook wanted to make a difference.

"The giving back was the most important thing, making a difference," Kohrt said. "While he had fantastic relationships with other people, he basically had no personal life."

Brook married twice, but divorced twice, and there were no children.

"He decided not to have children because he felt he really wanted to do his research and give back to the world that way," Kohrt said. "He and I had incredible disagreements over that. I felt family would give him all that support."

But his son said he had seen how often his father's medical practice took him away from his family.

"'I know how much you've been gone, Dad,'" Kohrt remembered Brook saying once. "'I'm gone even more than you've even thought of being gone.'"

Brook started out studying cancer, and in particular, what are called monoclonal antibodies, cells that will bind to specific other cells. If such a cell can be found that will target a specific cancer cell, it can be used to block a key part of a tumor's cell's functioning or attach something toxic to that cell and kill it. Where traditional chemotherapy kills many cells, cancerous and noncancerous, a monoclonal antibody can attack only the bad cell.

There has been rapid progress as researchers have discovered more and more ways of targeting specific tumor cells, either with drugs or by stimulating the body's immune system to attack cancer cells.

Brook was a leader in the field, working on lymphoma — a cancer of the blood — an appropriate research topic given his own experience with less-than-perfect blood.

"I feel like my experiences have prepared me to provide some level of empathy for my patients who are newly diagnosed with cancer," Brook Kohrt told Stanford Medicine magazine in 2013. "I can really feel how scared they can be because I remember what it was like to be in that situation. What I'm doing now, all of it, is fueled by my personal background with hemophilia."

But Brook's own medical problems worsened.

He had taken increasing doses of Factor B as he got older, and when he needed an operation to repair a fractured leg, replace a knee joint, and put a pin in his femur, he took even more, Kohrt said. His body slowly started to reject the very drug that was keeping him alive.

"He had to have larger and larger doses," Kohrt said. "The specter of death was ever closer."

Brook tackled the problem head-on: If his body was rejecting the cure, he would himself design a monoclonal antibody that would overcome his body's resistance. He succeeded, with help from researchers in Europe, but the side effects were too severe.

"It caused an immune reaction throughout his body, so it didn't work," Kohrt said.

He turned to a new experimental treatment, called bispecific monoclonal antibodies, a way of clotting the blood that did not require Factor 8, and moved to Europe to participate in clinical trials that had not yet begun in the U.S. The treatment seemed to be working, so he took a break a month ago and headed to the Caribbean for a therapeutic retreat.

But things went wrong. Brook developed a staph infection that spread to his blood. He returned to Miami for treatment, but then suffered massive bleeding in his brain, something he had always feared.

He died Feb. 24 at age 38.

In an obituary, The New York Times called him "a hemophiliac who transformed his own chronic condition into a personal and public crusade for medical cures."

In announcing his death, the president of the Society for Immunotherapy of Cancer praised his "significant impact on the field" and said he had "brought his considerable scientific insights and incredible energy to every project."

There is a fund in his memory for Erlanger's new Children's Hospital.

"I have to have an incredible sense of gratitude, that he had the years he had," Kohrt said. "I have to be grateful for all he has accomplished, and how he moved cancer therapy forward."

But there is still the sadness of his loss, made deeper by the knowledge the field is changing, that new cures are being discovered and that his son might have found them himself, if only he had had more time.

There is love and loss in his voice as he tries to explain how it feels to be a doctor of children and to not be able to save his one special child.

"Probably no parent who looks at their child's death, whether it is in a car accident or whatever, wouldn't say if he had just waited five more minutes, he would have been somewhere else but that has to spur us to provide better care to do more research, and that's what it's all about."

And then he adds, softly, "Life is tenuous."

Documentary Filmmaking and Medical Anthropology: Following the Money in Mongolia

March 3, 2016

By Robert Koenig, Brandon Kohrt, & Holbrook Kohrt

Conducting research in medical anthropology, one would think that we had a broader view of illness and its socioeconomic context. However, that was not the case when we started filming the documentary The Wrestler’s Second: Mongolia’s Struggle with Yadargaa. Fresh from our undergraduate training, this was our first attempt independently conducting anthropology research and making a documentary. We traveled to Mongolia in 1999 to observe how the shift from communism to capitalism a decade earlier had impacted health and wellbeing. We studied a fatigue related disorder, yadargaa, part of the Mongolian traditional medicine nosology. We wanted our documentary to follow one person with yadargaa as he or she went through treatment for the condition.

 

After interviewing people with the condition in traditional and allopathic hospitals, we selected Tsoodol, an older man who had recently suffered a stroke and had been diagnosed with yadargaa. We met Tsoodol on the yadargaa ward in a hospital in Ulaanbaatar where he was receiving acupuncture treatment. We were told that the 69-year-old man was famous in the athletic community.  He was a wrestling coach whose wrestlers had won at the famous Naadam competition held ever year in Mongolia. Tsoodol was admitted after suffering from a stroke leaving him with facial paralysis and left-sided weakness. His stroke was blamed not on hypertension, high cholesterol, or an arrhythmia, rather his primary diagnosis was yadargaa.

 

Tsoodol’s physician said that he needed further treatment and that she was recommending a trip to Khujirt, a health spa in the countryside. Tsoodol said that he planned to follow the doctor’s recommendation. We thought this would be an opportunity to follow the course of treatment on film.

 

We interviewed Tsoodol and his wife in their felt tent in a crowded impoverished section of Ulaanbaatar. Both Tsoodol and his wife said that chronic worry over their family’s economic state caused the yadargaa.  “I have had yadargaa since 1990 when the economy changed.  After 1990 the government no longer gave us enough money for healthcare.  Before 1990 they paid healthcare costs.  But, now my pension is so low that I must work very hard at selling things at the Black Market,” Tsoodol told us.

 

Tsoodol could do little to alter the economic structure of his nation.  The social factors impacting his yadargaa were not under his control.  At the moment the only care Tsoodol received was acupuncture. Khujirt, the recommended health spa, was a day’s drive south of Ulannbaatar and was famous for treating yadargaa.  Patients stay for a few weeks.  They relax in the countryside, and enjoy sulfur springs, mud baths, and hot stone massage.  Therapy includes acupuncture and herbal medicines.

 

As we began the plan to travel with Tsoodol to Khujirt, the issue of compensation arose. We did not want to pay cash to Tsoodol directly. We worried that paying him would be coercion to get the treatment. After lengthy discussions among ourselves and with Tsoodol’s family, we found that the cost for a 14-day treatment at Khujirt would be approximately $100. Under the new healthcare system, Tsoodol was required to pay half of this. This was more than a month’s earning for the financially concerned man. 

 

We decided that paying for Tsoodol’s cost of the treatment would partially compensate him for participating in the documentary. We had heard of other filmmakers paying for the costs of rituals and ceremonies so that they could film them. This, at the time, seemed comparable in our minds.

 

A few weeks later we traveled with Tsoodol to Khujirt.  We met with doctors who developed a fourteen day treatment for Tsoodol. That afternoon Tsoodol took a bath in the naturally hot mineral water that flows underneath the resort.  After his bath Tsoodol showed us his hand.  The sulfur water had turned his silver wedding band a metallic yellow.  “Today, my ring became gold from silver.” Then he surprised us by saying, “It is too bad I cannot stay here.  If I stay here for fourteen days, my ring will become real gold.  After that mineral bath, I feel very happy. I should stay, but I have to go to my family in the countryside.” Tsoodol explained that he needed to go visit his relatives in a nearby region of the Gobi. We tried to encourage Tsoodol to do the treatment, but did not want to force the issue.

 

The next day we traveled with Tsoodol to visit his hometown. While with his family in the countryside, Tsoodol decided that he would receive the treatment at Khujirt after all.  He said that a family member was traveling to Khujirt the next day and could take him back. He suggested that we meet him later to film him as the treatment progressed. We then gave him the $50 to pay for his treatment. Our plan was to return to Ulaanbaatar then meet with Tsoodol again at Khujirt after his treatment was underway. Then, we would go with him to the Naadam festival in his village.

 

Only three days later, to our surprise, we saw Tsoodol back in Ulaanbaatar selling bowls at the Black Market. Our reaction was a rapid sequence of emotions spanning anger, frustration, to eventual realization of our own misconceptions. The health spa and alchemy of Khujirt like most of the therapy for yadargaa is palliative. It does not correct the underlying problem. Massage and acupuncture was not going to stop him worrying about his families’ money. However, our $50 temporarily helped Tsoodol’s financial stress. Tsoodol revealed our ignorance to the root socioeconomic cause of Tsoodol’s yadargaa. Eventually, we did finish the film, and included in it this encounter with Tsoodol. In the end, documenting these events provided a more realistic picture of the contingencies of illness and economics. When working with documentary participants such as Tsoodol, the ethics of finances and filmmaking similarly cannot be extracted from the immediate socioeconomic conditions of illness and wellbeing.  

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