Family Events Update: Spring 2016

Spring brought with it a new season of the races, tournaments, and festivals that help spread the word about the Children’s Brain Tumor Project and raise much-needed funds. Many thanks to the families that host these events, and to the communities that continue to to support them. We could not do our work without you!

Janine Koehler at 7th annual tournamentThe Christian Koehler Foundation got some nice coverage in Newsday for its 2016 Lacrosse Tournament. Chris and Janine Koehler host this event each year in memory of their son, and they have donated a total of more than $40,000 of the proceeds to the Children’s Brain Tumor Project. Our thanks to Chris and Janine, as well as to the players and families who continue to turn out to support us each year.
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Humans of New York

Dr. Mark SouweidaneThose of you who follow the Humans of New York photo project on Facebook don’t need to be told what happened last month, when a two-week-long story about Memorial Sloan Kettering’s pediatric cancer service broke all kinds of traffic records. The final two days of the series, which had been developed as a fund-raiser for MSK, featured first Dr. Souweidane and then Julie, the mother of a former DIPG patient. The result was a veritable tsunami of comments, likes, shares, and donations. What started out as a $1 million campaign ended up with a total $3.85 million raised to support pediatric cancer research and patients. Based on the amount of money raised in those final days of the story, MSK will set aside an astounding $1.2 million for Dr. Souweidane’s work there. (As many of you know, Dr. Souweidane is a Weill Cornell Medicine doctor and a Weill Cornell Medical College faculty member and researcher, but he is director of pediatric neurosurgery at both NewYork-Presbyterian and Memorial Sloan Kettering.) For those who were not following along as it happened, visit humansofnewyork.com.

Family Corner: Kelly Fisher

“Your marriage must be so strong.”

I have heard this statement often over the past three years. My 3-year-old daughter, Allie, died of gliomatosis cerebri in June of 2013. My husband, Kyle, and I are still together, and our marriage has survived this tragedy. But the truth is that it has been extremely difficult to rebuild our lives after cancer stole so much from us. Read more

DIPG Clinical Trial Update, Spring 2016

It will be four years in May since Dr. Souweidane treated the very first patient in his clinical trial testing the safety of convection-enhanced delivery (CED) of 124I-8H9 against DIPG. (The 8H9 antibody has been shown to bind to the tumor, and 124I kills cancer cells with radiation.) The trial was originally expected to last for two years and treat12 DIPG patients at four dose levels; in 2014 the FDA approved an extension of the trial to seven dose levels. Dr. Souweidane is currently treating patients at the seventh dose level, and has re-treated several children. There have been no adverse effects on any child. Read more

Lab Update: Spring 2016

I am very proud to be working in the Children’s Brain Tumor Project laboratory, and quite astounded at how fast the initiative has grown. I was appointed as a Fellow in 2012, when I was assigned to work on the role of bone-marrow-derived cells in low-grade glioma transformation. Today, I’m honored to lead the daily operation of our lab’s partnership with the Weill Cornell Institute for Precision Medicine (IPM), which allows us to do exactly the sort of personalized medicine that we dreamed about just a few years ago.

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Family Corner: Brenda Ries

February has always been special for me…it’s the month of my birthday, it’s when I met my husband 23 years ago, and on Valentine’s Day 2007 my second son, Sean, was born, making our family of four complete. But in 2012, February lost its charm in a way I never could have imagined. Eight days before his fifth birthday, Sean was diagnosed with a dysembryoplastic neuroepithelial tumor (DNET) in the left side of his brain. Told by doctor after doctor that his tumor was inoperable due to its size and location, we were not given many good options for treating Sean: surgery that would likely leave him with a devastating brain injury; chemotherapy that might not even work on his type of tumor; or radiation, which can have devastating long-term side effects on the developing brain of a 5-year-old child. Read more

A special message to the Children’s Brain Tumor Project community

Dear Friends and Families,

We’d like to take this opportunity to wish you all the best of the holiday season, and to thank you for all you’ve done to support the critical research we’re doing at the Children’s Brain Tumor Project. We could not do the work we do without your support, and we are deeply grateful.

What started as a local effort just a few years ago has now spread around the country, and around the world. In 2011 our donations came almost entirely from New Yorkers — today we have supporters in 47 states, from Alaska to Florida, Maine to Hawaii, and almost every state in between. We have received donations from supporters around the world — from as close as Canada and as far away as China — who have heard our message and responded to our call for help. That speaks volumes about you, and the power of your individual voices when they join together in our campaign to raise awareness and much-needed funding.

We are making real progress, still operating on a shoestring to protect every dollar we receive. Unlike donations made to large nonprofits — where a percentage of donations go to those big ad campaigns — your donations go straight to the lab. Your dollars keep the lights on in our new lab space, pay for the equipment and supplies we need to do our work, and allow us to bring in the brain power we need most of all to keep the research going. Every dollar counts, and every dollar is put to the best use possible.

This year has been an exciting and productive one. We opened a second tumor registry, and are now sequencing every single pediatric brain tumor we treat. We are growing GC and DIPG cell lines in our lab for real-time testing. We are nearing completion of the DIPG clinical trial, ready to move on to the next phase the minute Phase I is finished. We’ve had several new research papers published and have more in the pipeline. The more research we can complete and publish, the more we help other researchers around the world to advance their own work, which then helps ours in return. The more results we show, the better our chances of securing major grants from large foundations or the federal government. None of this is easy, but we are operating at full throttle to accelerate this work and find the answers we need.

But… unfortunately 2015 has fallen short of what we need to continue our work. We can’t head into 2016 with confidence without raising at least $100,000 more, and quickly. That’s a big number, but we know we can count on you. You are one of more than 3,000 supporters — if just 1,000 of you donated $100 today we would meet our goal. If each and every one of you pitched in just $40, we’d exceed that goal. Please consider making a gift to help us go into 2016 strong, continuing this important work.

Click here to make a secure online donation, or see below for how to donate by check or wire transfer, or to make a gift of stock or arrange a corporate matching gift.

Please stick with us — we need your ongoing support! We are so confident that we are at the tipping point, and that this fast-paced research is getting us closer to a cure. We look forward to a day when families won’t be told that there is no hope, that their child will die. We know there will be a day when they’ll hear that diagnosis followed by “and here’s how we’ll fix it.” When that day comes, it will be thanks to you.

With our deepest gratitude, and our very best wishes to you and your family during this holiday season,

The Children's Brain Tumor Project Team

Dr. Jeffrey Greenfield, Dr. Mark Souweidane, Dr. Caitlin Hoffman, and the entire Children’s Brain Tumor Project team

Click here to make a secure online donation or a monthly pledge. You may also make your gift with by check, payable to Weill Cornell Medical College. Please indicate “Children’s Brain Tumor Project” in the memo area. (Use the Printable Gift Form if you’d like.)
Please mail checks to:
Weill Cornell Pediatric Brain & Spine Center
c/o Roseann Henry
525 East 68th Street, Box 99
New York, NY 10065

If you have question about making a donation or would like to discuss corporate matching programs, donations of securities, or other options for giving, please contact Ana Ignat, Department Administrator, at ani7003@med.cornell.edu.