How Humans of New York Raised $1 Million Overnight for MSK Pediatric Neurosurgeon

By Meredith Begley,

Tuesday, September 13, 2016

Mark Souweidane, DIPG specialist and pediatric neurosurgeon at Memorial Sloan Kettering Cancer Center
Summary

The Department of Pediatrics at Memorial Sloan Kettering was recently featured on the social media sensation Humans of New York. Over three weeks, the series raised nearly $4 million for pediatric cancer research, with more than $1 million going directly to pediatric neurosurgeon Mark Souweidane’s efforts to treat a rare, fatal childhood cancer known as DIPG. We caught up with Dr. Souweidane to hear about his experience and learn how this new funding will forever change the course of treatment.

Until just a few months ago, Memorial Sloan Kettering pediatric neurosurgeon Mark Souweidane had never even heard of the website that would give new vigor to his life’s work.

“I didn’t know anything about Humans of New York — at all,” he says.

But photographer Brandon Stanton, who runs the online photo essay phenomenon, knew that interviewing Dr. Souweidane would be integral to the pediatric cancer series he was shooting at MSK.

The impact of Dr. Souweidane’s interview was beyond what anyone could have imagined. In just one night, readers of the series donated what had previously taken Dr. Souweidane ten years to earn for research into a fatal brain tumor called diffuse intrinsic pontine glioma (DIPG). DIPG is very hard to treat because it’s located in an inoperable part of the brain. Children who are diagnosed with it tend to live just a year or less.

But there is hope, via a clinical trial that Dr. Souweidane oversees. One girl who has received this experimental treatment, in which chemotherapy is injected directly into the brain tumor, has now been alive nearly four years post-diagnosis — three years beyond expected survival.

Sharing His Story with Brandon Stanton

Mr. Stanton learned of Dr. Souweidane’s work during an interview with MSK pediatric oncologist Kim Kramer. Days later, Dr. Souweidane was fielding questions from Mr. Stanton in his clinic. They talked for nearly three hours.

“It was very easy to speak with him,” Dr. Souweidane recalls of their meeting. “He knows what his readers want to hear about: motivation, frustration, success, failure.”

Dr. Souweidane says he was grateful that Mr. Stanton gave him the opportunity to unload some of the emotional weight he’s carried in treating children with DIPG over the years. “It was very easy to talk about things that you commonly think about as a physician but don’t really express to your patients, their families, or your colleagues.”

He also said that finding a cure would create some justice after years of challenges. And now, he is closer than ever to getting there.

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Improving a Clinical Trial for Future DIPG Patients

After publishing Dr. Souweidane’s interview, Mr. Stanton closed out his MSK series with the story of Max, one of Dr. Souweidane’s patients who ultimately succumbed to DIPG. Max’s mother spoke about her son’s last days and how raw her grief still felt. The stories inspired a huge number of readers to take action: Overnight, Dr. Souweidane received $1.2 million in donations to help him find a cure for this devastating disease.

In cancer communities, $1 million might not seem like a lot. But for such a rare disease that gets little national attention, “it will change the course of treatment, undoubtedly,” Dr. Souweidane says.

He will put the money toward improving his clinical trial for future patients. “We’re now going to take this to another level,” he says. “We showed that we can do it. Now let’s design it in such a way that we can do it well. Do we add other drugs? Do we give more treatments? Do we treat at an earlier point in time? These are all very, very particular questions.”

The answers, he says, will benefit children worldwide.

“If there’s a 20 percent chance or there’s a 5 percent chance [of success], it’s remarkably different than the status quo,” he says. “And that would be an amazing feat.”

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A Decade of Work Duplicated Overnight

With his new funding, Dr. Souweidane will be able to work toward answers a lot sooner than he thought.

“It had taken us a decade to get the funding to drive this clinical trial, and to see that duplicated in a day and a half is just phenomenal,” he said.

He’s grateful for the increased awareness of DIPG, “which I never in my wildest dreams believed would exist.” His one request to Mr. Stanton: to hold him accountable. Dr. Souweidane said it keeps him going.

“People who were generous — whether it be a dollar, a thousand dollars, whatever the case may be, whoever read or even read and didn’t donate — you would expect that they’d like an answer. And I don’t blame them.”

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Comments

Please inform me how I can donate specifically to Mark Souweidaine's research for a cure for DIPG.

Dear Heather, thank you for reaching out to us. Please contact our Development office directly. The staff their can answer your questions. They can be reached at 1-866-815-9501
or via email at development@mskcc.org. You may also learn more about donating to Memorial Sloan Kettering by visiting our Giving pages at https://giving.mskcc.org/. We appreciate your generosity!

Thank you for this update. It's amazing to read about the impact the donations have made/will continue to make. Three cheers for Dr. S., Brandon, and everyone working so hard at MSK.

Thanks for your kind words, Lauren!

I was one of the people who could only donate a few dollars to this campaign. As a mother with a child, I cannot believe how strong you and your colleagues are to do such work, and how strong the families are that are affected by this tumor. Thank you! YES, we hold you accountable. Now go kick DIPG's butt!

Dear KellyJo, we appreciate your encouragement!

What a wonderful email I just received! I got involved because Dr Marc Souweidane was a young surgeon who operated on my infant son over 20 years ago. I was impressed with him then and very interested in what he is doing now when I saw the 'Humans of New York' article. I also have a friend who lost her young daughter to a brain tumor. Needless to say, I am more impressed with Dr Souweidane and his dedication to wiping out this horrible disease. Thank you so much for this update.

Dear Suzanne, we are glad to know you felt your son was well cared for by Dr. Souweidane. Thank you for sharing your thoughts and experience on our blog.

Thank you for this update. This HONY series affected me deeper than most things I've read, and it still does. Thank you all for what you do for the children; and thanks Brandon.

Thanks for update , you amazing folks!
My father fought with brain cancer for 20 yr and My best memeries of life are the times we were hearing some hope and good news from the doctors. I wish that type of hope remains alive for everyone who is affected with cancer and the loved ones.
Bests

Dear Aida, we are glad your father felt well-cared for by his MSK team. Thank you for sharing your thoughts on our blog.

I still think often of Max's mother. I am so glad that my small contribution may help prevent another parent and child from going through this.

Dear Julke, we appreciate your generosity and for sharing your comment on our blog.

I've never felt like a donation has ever made any kind of appreciable difference in any way. I hope someday this thing, this killer of children and humans will be brought to task, handily. Dr. S, , keep doing your best and thank you.

Dear Kim, we appreciate your encouragement! Thank you for your comment.

It truly warmed my heart to receive this update in my inbox. Thank you for all that you do. <3

Wonderful to read this response and what heroes you all are. I was so moved by these stories and any improvement is another chance at life for someone.

Dear Jonina, we are humbled by your kind words. Thank you for sharing your thoughts on our blog.

Thank you, Dr. Souweidane and MSK, for the wonderful work that is being done. As someone that has lost more family to cancer than I can count, this series hit particularly close to home.

I've never been so sure of my few dollars going much further than usual than with my little contribution to this groundbreaking effort. It's doctors like him and places like MSK that will shape a future where parents can worry about sending kids to college, and not about a DIPG monster in the kids' brain. God bless you and all the families you are bringing hope and care to.

Dear Neej, we are sorry to hear about the loved ones you have lost due to cancer. We appreciate your generosity and thank you for sharing your thoughts and experience on our blog.

The Humans of New York series on MSK, and Max's mother's heart wrenching story, in particular, inspired me to donate. Thank you so much for this update.

Dear Ellen, thank you so much for your generosity and support of our research!

I have a metabolic autoimmune syndrome. It's progressive and absolutely relentless, it haults temporarily, then it begins anew. I participate in research not to benefit myself, but for those that will come after me.
What stayed with me regarding dr. Souweidane's work is a comment made by the mother of a child that were to be the first patient of a clinical trial. "Whatever happens, thank you for trying!" (on HONY May 19th).
That's inevtibly what everyone wants, for someone to try. Even if it fails in the end, there was that. Someone tried.

Dear Jessica, we are sorry to hear about your diagnosis. Thank you for selflessly volunteering to participate in clinical research. Advances in care could not happen without people like you.

Thank you so much for the update! I also still think of Max's mother and her story. Thank you for the important work that you do

Thanks so much for your comment, Holly!

As I look back on this year and all the turmoil in the world, I especially think about all the children who are fighting to live because of war, poverty and illness. Donating to this cause has been the highlight of my year. Brandon Stanton is a true humanitarian and Dr. Soudewaine and his team are valiant fighters. I wish for them every success.

Dear Amanda, thank you so much for your generosity and for sharing your thoughts on our blog!

Having previously worked in a hospice I was very moved by the stories featured on HONY, however, I was only able to donate a small sum. Thank you for the update and I wish you the best of luck with your trail.
You do amazing work, don't ever forget that. I hope to be able to donate more regularly in the future.
All the best,
Alison

Dear Alison, we really appreciate your generosity in supporting our research. Thank you for sharing your thoughts and encouragement!

Receiving a thank you email from Dr. Souwdeine and MSKCC was unexpected!! I only pray that the donations keep rolling in because you can be sure that Dr. Souwdeine will use every penny to find a cure for DIPG! He is my grandson Brayden Knapp's neuro surgeon and we could not have any more confidence in this amazing doctor. Prayers always for all those children battling this horrific disease. Thank you Dr. Souwdeine for never ever giving up. You are an incredible doctor!

Dear Gail, thank you for your kind words and encouragement. We are glad to know that your grandson has felt well-cared for by Dr. Souweidane.

Dr. Souweidane and MSK...THANK YOU! please continue on keeping us informed: with your work you are saving us all. Hope can change humans.

Dr. Souwdeine and MSKCC...THANK YOU! With your work you are saving us all: hope can change humans. Please continue on keeping us informed.

Thanks for your comment, Elisa!

Thank you for keeping us updated. I have twice requested information on how I can donate funds directly to Dr. Souweidane & his research, with no response. Please advise.
Thank you again.
Patricia Derrick

Dear Pat, we are sorry to hear that you have had trouble getting information about how to donate to Dr. Souweidane's research at MSK. Please contact our Development office directly. The staff there can answer your questions. They can be reached at 1-866-815-9501or via email at development@mskcc.org. You may also learn more about donating to Memorial Sloan Kettering by visiting our Giving pages at https://giving.mskcc.org/. We appreciate your generosity!

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