Donate in memory of Carolyn Byington

Carolyn Byington, 26, was a beloved patient of Dr. Mark Souweidane.  He successfully treated her for chiari malformation in 2008, and he remembers her and her family fondly to this day.  Carolyn tragically passed away on June 10, and her family would like to support Dr. Souweidane’s research in her memory.

“We want the last chapter of Carolyn’s life to be one where her friends and loved ones can help others in her memory.  Carolyn was a true philanthropist who was active in many charitable organizations, and we know she would have wanted to help other children under Dr. Souweidane’s care by supporting his research,” said Carolyn’s mother, Jennifer Byington.  

Dr. Mark Souweidane co-founded the Children’s Brain Tumor Project at Weill Cornell Medicine, under which he leads a team of researchers.  Your support of his lab will enable his team to explore new inroads into researching Chiari malformation in addition to supporting his basic research on innovative surgical approaches to pediatric brain tumors. We thank you for making a donation in memory of Carolyn.

You can make a secure credit card donation here. Please include Carolyn’s name as the honoree on the form so we can notify her family.

If you prefer to mail a check, please print and fill out our printable donation form.  Donations should be made payable to: Weill Cornell Medical College, and please indicate Carolyn Byington in the memo area.

The 11th Annual Cristian Rivera Foundation Celebrity Gala

Dr. Mark Souweidane, Co-founder of the Children’s Brain Tumor Project, has dedicated his career to treating and studying rare pediatric brain tumors, with a specific focus in DIPG.  The Cristian Rivera Foundation has been supporting Dr. Souweidane’s research for eleven years, since DIPG took Cristian’s life in 2009.

We hope you will consider sponsoring, attending, or running an ad in the journal in support of this event. The proceeds from the annual gala directly support the Children’s Brain Tumor Project, and the Cristian Rivera Foundation has proven to be one of our largest and most consistent supporters over the years.  A highlights video from the 2018 gala can be found here.  We are indebted to this wonderful organization, and the tireless efforts of founder, John Rivera.

For more information and to peruse sponsorship/ticketing options, please visit https://cristianriverafoundation.org/11thgala.html.

 

Set up a Birthday Fundraiser

The greatest gift you can give is hope.  If you would like us to set up your own personalized fundraising page to commemorate your birthday, please fill out the form here and we will happily coordinate this with you!

We will send you a link to your fundraising page within 24 hours.  Thank you for your tremendous support!

Butterfly Sisters

Seven years ago, Jordan Wetzel lost her little sister, McKenna, to a terminal brain tumor called DIPG.  McKenna was diagnosed with the inoperable brain stem tumor in 2011, and died six months later, just two weeks before her eighth birthday. 

When Jordan was a senior at the Edison High School in Huntington Beach, she was obligated to deliver a senior project. Jordan decided to take the opportunity to share her personal experience in an effort to raise awareness by self-publishing her own book, “Butterfly Sisters: The Life of Pediatric Cancer Siblings.” 

 The assignment was a passion project for Jordan that resulted in a positive impact across the childhood cancer community and beyond. 

She started with sharing her family’s story, telling about her personal struggles with understanding McKenna’s diagnosis, sharing memories and the struggle she faced (and continues to face) after the loss of her only sister.  Then she interviewed other cancer siblings and shared their perspectives in the book, as well.

 Throughout the year, Jordan dedicated 784 hours to writing, interviewing cancer siblings, editing, publishing, and processing her grief through it all.  While healing and cathartic, the process was also emotionally draining on Jordan and her entire family – but she refused to compromise on the quality of her story, because she knew the perspective of cancer siblings is one that is rarely shared, and their stories needed to be told. 

 In May 2017, she told the Daily Pilot, “I feel like cancer siblings don’t get much appreciation when it comes to the cancer world,” describing them as “silent supporters.” “In the headlines, it’s always about the parents and the kids themselves — there’s never talk about siblings.”

 When her parents offered to help, or to review what she had written throughout the process, Jordan explained that she wanted the project to be something she did entirely on her own. 

Butterfly Sisters is an incredible tribute to cancer siblings and the silent battles they fight every day.  It is now available for purchase here. 

Today, Jordan continues to raise awareness and help other cancer siblings through her own experience.  Visit the McKenna Claire Foundation to purchase a book.  http://mckennaclairefoundation.org/product/butterfly-sisters-booklet/ 

 

Jordan is doing something.  Will you?


You can do something, too

The generous gifts of our supporters allow our neuroscientist/researchers to continue their important work.

Make a Gift by Credit Card
You may make a secure online credit card donation here. Make a Secure Credit Card Donation >>

Make a Gift By Check
Please print out and fill in our printable gift form. Donations should be made payable to: Weill Cornell Medical College. Please indicate the Children’s Brain Tumor Project in the memo area.

 

The CBTP Declares September to be Childhood Cancer ACTION Month

In 2012, President Obama declared September to be national “Childhood Cancer Awareness Month.”  As many know, childhood cancer is represented by the gold ribbon, and as a community we have seen the “go gold” movement generate increased momentum.

Although increased awareness = increased funding = increased research = increased success in discovering new treatment options, none of this is happening fast enough for children who are in treatment today.

The Children’s Brain Tumor Project is “Powered by Families,” and among the 50+ families on our family council, the majority are bereaved.  Awareness simply isn’t enough.  This September, we are asking you to take action.

Taking action can be a grand gesture, or a simple post on social media.  Host a fundraiser, sign up for a newsletter, share the facebook page of a child in treatment, read our latest newsletter.  Any action brings us one step closer to progress.

There is a CBTP profile picture frame that can be used for the month of September by visiting www.facebook.com/profilepicframes/ and entering “Children’s Brain Tumor Project Go Gold” in the search nox.  Please consider changing yours to “go gold” for the month of September.  Follow our posts on facebook for ideas on how you can take action this month, and, most of all, we hope you are touched by the individual stories we will be sharing about the children who are part of our family council.  The Children’s Brain Tumor Project is “Powered by Families” and we look forward to sharing their touching stories with you in an effort to raise awareness and increase action.

 

CBTP Published Research

OXFORD ACADEMIC NEURO-ONCOLOGY ADVANCES – MAY 2019

Combined Targeting of PI3K and MEK Effector Pathways via CED for DIPG Therapy

Raymond Chang, Umberto Tosi, Julia Voronina, Oluwaseyi Adeuyan, Y Linda Wu, Melanie E Schweitzer, David J Pisapia, Oren J Becher, Mark M Souweidane, Uday B Maachani.  Download full manuscript here.

 

ACS CHEMICAL NEUROSCIENCE – MAY 2019

Real-Time, in Vivo Correlation of Molecular Structure with Drug Distribution in the Brain Striatum Following Convection Enhanced Delivery.

Tosi U, Kommidi H, Bellat V, Marnell CS, Guo H, Adeuyan O, Schweitzer ME, Chen N, Su T, Zhang G, Maachani UB, Pisapia DJ, Law B, Souweidane MM, Ting R.ACS Chem Neurosci. 2019 May 15;10(5):2287-2298. doi: 10.1021/acschemneuro.8b00607. Epub 2019 Mar 6.
PMID:30838861

 

NATURE – JANUARY 2019

Tracking tumour evolution in glioma through liquid biopsies of cerebrospinal fluid.

Miller AM, Shah RH, Pentsova EI, Pourmaleki M, Briggs S, Distefano N, Zheng Y, Skakodub A, Mehta SA, Campos C, Hsieh WY, Selcuklu SD, Ling L, Meng F, Jing X, Samoila A, Bale TA, Tsui DWY, Grommes C, Viale A, Souweidane MM, Tabar V, Brennan CW, Reiner AS, Rosenblum M, Panageas KS, DeAngelis LM, Young RJ, Berger MF, Mellinghoff IK.
Nature. 2019 Jan;565(7741):654-658. doi: 10.1038/s41586-019-0882-3. Epub 2019 Jan 23.
PMID: 30675060

 

NATURE – JANUARY 2019

18F-Radiolabeled Panobinostat Allows for Positron Emission Tomography Guided Delivery of a Histone Deacetylase Inhibitor.

Kommidi H, Tosi U, Maachani UB, Guo H, Marnell CS, Law B, Souweidane MM, Ting R.ACS Med Chem Lett. 2018 Jan 17;9(2):114-119. doi: 10.1021/acsmedchemlett.7b00471. eCollection 2018 Feb 8.

Nature. 2019 Jan;565(7741):654-658. doi: 10.1038/s41586-019-0882-3. Epub 2019 Jan 23.

PMID:30675060 FREE DOWNLOAD

 

LANCET ONCOLOGY – AUGUST 2018

Convection-enhanced delivery for diffuse intrinsic pontine glioma: a single-centre, dose-escalation, phase 1 trial.

Souweidane MM, Kramer K, Pandit-Taskar N, Zhou Z, Haque S, Zanzonico P, Carrasquillo JA, Lyashchenko SK, Thakur SB, Donzelli M, Turner RS, Lewis JS, Cheung NV, Larson SM, Dunkel IJ.Lancet Oncol. 2018 Aug;19(8):1040-1050. doi: 10.1016/S1470-2045(18)30322-X. Epub 2018 Jun 18. Erratum in: Lancet Oncol. 2018 Aug;19(8):e382.
PMID: 29914796

 

JOURNAL OF NEUROSURGERY – JULY 2018

Volume of distribution and clearance of peptide-based nanofiber after convection-enhanced delivery.

Singh R, Bellat V, Wang M, Schweitzer ME, Wu YL, Tung CH, Souweidane MM, Law B.J Neurosurg. 2018 Jul;129(1):10-18. doi: 10.3171/2017.2.JNS162273. Epub 2017 Sep 8.
PMID:28885119

NEUROONCOLOGY – JUNE 2018

TBIO-06. B7-H3 expression as a potential biomarker of prognosis and target in pediatric glial and non-glial CNS tumors.

Uday Bhanu Maachani, Zhiping Zhou, Daniel Martinez, Mariarita Santi, Nadia Dahmane, and Mark Souweidane. PMCID: PMC6012773

 

COLD SPRING HARBOR MOLECULAR CASE STUDIES – APRIL 2018

Precision oncogenomics in pediatrics: a personal reflection.

Campbell C, Greenfield JP.Cold Spring Harb Mol Case Stud. 2018 Apr 2;4(2). pii: a002865. doi: 10.1101/mcs.a002865. Print 2018 Apr. Review.
PMID: 29610396. Free PMC Article

 

JOURNAL OF NUCLEAR MEDICINE – MARCH 2018

PARP-1-Targeted Radiotherapy in Mouse Models of Glioblastoma.

Jannetti SA, Carlucci G, Carney B, Kossatz S, Shenker L, Carter LM, Salinas B, Brand C, Sadique A, Donabedian PL, Cunanan KM, Gönen M, Ponomarev V, Zeglis BM, Souweidane MM, Lewis JS, Weber WA, Humm JL, Reiner T.J Nucl Med. 2018 Aug;59(8):1225-1233. doi: 10.2967/jnumed.117.205054. Epub 2018 Mar 23.

 

JOURNAL OF NEUROONCOLOGY – MARCH 2018

Patterns of relapse for children with localized intracranial ependymoma.

De B, Khakoo Y, Souweidane MM, Dunkel IJ, Patel SH, Gilheeney SW, De Braganca KC, Karajannis MA, Wolden SL.J Neurooncol. 2018 Jun;138(2):435-445. doi: 10.1007/s11060-018-2815-7. Epub 2018 Mar 6.

 

PEDIATRIC BLOOD CANCER – JANUARY 2018

A phase II study of radioimmunotherapy with intraventricular 131 I-3F8 for medulloblastoma.

Kramer K, Pandit-Taskar N, Humm JL, Zanzonico PB, Haque S, Dunkel IJ, Wolden SL, Donzelli M, Goldman DA, Lewis JS, Lyashchenko SK, Khakoo Y, Carrasquillo JA, Souweidane MM, Greenfield JP, Lyden D, De Braganca KD, Gilheeney SW, Larson SM, Cheung NV.Pediatr Blood Cancer. 2018 Jan;65(1). doi: 10.1002/pbc.26754. Epub 2017 Sep 22.
PMID:28940863

 

PEDIATRIC BLOOD CANCER – SEPTEMBER 2017

A phase II study of radioimmunotherapy with intraventricular 131 I-3F8 for medulloblastoma.

Kramer K, Pandit-Taskar N, Humm JL, Zanzonico PB, Haque S, Dunkel IJ, Wolden SL, Donzelli M, Goldman DA, Lewis JS, Lyashchenko SK, Khakoo Y, Carrasquillo JA, Souweidane MM, Greenfield JP, Lyden D, De Braganca KD, Gilheeney SW, Larson SM, Cheung NV.Pediatr Blood Cancer. 2018 Jan;65(1). doi: 10.1002/pbc.26754. Epub 2017 Sep 22.
PMID: 28940863

 

PALLIATIVE SUPPORT CARE – SEPTEMBER 2017

Rapid autopsy of a patient with recurrent anaplastic ependymoma.

Lange KR, Fischer C, Rajappa P, Connors S, Pisapia D, Greenfield JP, Beltran H, Rubin M, Mosquera JM, Khakoo Y.Palliat Support Care. 2018 Apr;16(2):238-242. doi: 10.1017/S1478951517000864. Epub 2017 Sep 25.
PMID:  28942746 Free PMC Article

JCO PRECISION ONCOLOGY – JUNE 2017

Next-Generation Rapid Autopsies Enable Tumor Evolution Tracking and Generation of Preclinical Models.

Pisapia DJ, Salvatore S, Pauli C, Hissong E, Eng K, Prandi D, Sailer VW, Robinson BD, Park K, Cyrta J, Tagawa ST, Kossai M, Fontugne J, Kim R, Sigaras A, Rao R, Pancirer D, Faltas B, Bareja R, Molina AM, Nanus DM, Rajappa P, Souweidane MM, Greenfield J, Emde AK, Robine N, Elemento O, Sboner A, Demichelis F, Beltran H, Rubin MA, Mosquera JM.JCO Precis Oncol. 2017;2017. doi: 10.1200/PO.16.00038. Epub 2017 Jun 14.
PMID: 29333526 . Free PMC Article

 

McKenna Still Shines

In January 2011, our healthy, active, intelligent 7-year-old daughter, McKenna, came down with what we thought to be a stomach virus. After a week of doctor visits, seeing her left eye begin to stray and her mouth begin to droop, we insisted on having a CT scan. Childhood cancer was never even a consideration in our minds before that scan, but less than 24 hours and one MRI later, we found ourselves surrounded by doctors at the nurses’ station in the PICU waiting to hear the diagnosis.

It was in the midst of that chaos that we were told our daughter had diffuse intrinsic pontine glioma, or DIPG, an extremely rare pediatric brain tumor that typically strikes between the ages of 5 and 7, infiltrates the brain stem, and has a 0% survival rate. Read more

Dr. Greenfield Invited to Join Englander Institute for Precision Medicine

Dr. Jeffrey Greenfield, Co-Founder of the Children’s Brain Tumor Project, has accepted an invitation to become a standing member of the Weill Cornell Medicine Englander Institute for Precision Medicine. Dr. Greenfield’s formal affiliation with the Institute is in recognition of his work in genomic sequencing of pediatric brain tumors and his ongoing research collaboration with the Institute.

Read More…