Claudia and Peggy

Claudia and Peggy are Doing Something

Like so many of us, Claudia Amboss and Peggy Theiss have been deeply impacted by cancer.  Peggy lost her beloved husband, Cliff, in 2009, and Claudia has seen multiple loved ones undergo treatment, recently losing her dear friend Frederico “Dico” Kowarick.   Both Peggy and Claudia also knew and loved young Elizabeth Minter, who lost her life to a rare and incurable pediatric brain tumor called gliomatosis cerebri.

Six years ago, Claudia and Peggy decided to do something about it, and they haven’t stopped since.  Working together, they have planned and executed a flawless Bridge and Tennis fundraiser at the Bronxville Field Club every year, known as the BFC Round Robin for Cancer Research.  This year’s event took place on September 28, 2018 and paid tribute to Elizabeth Minter by designating Elizabeth’s Hope as the beneficiary for the second year in a row.

Elizabeth’s Hope was founded in 2011 by Elizabeth and her parents, Mike and Emmie Minter, in order to exclusively fund the research underway at the Weill Cornell Medicine (WCM), and it provided the cornerstone for the launch of the Children’s Brain Tumor Project.  Their fundraising initiatives enabled the Children’s Brain Tumor Project at WCM to open its own lab designated to pediatric brain tumor research, which continues to grow in size year-over-year.

The event theme, Liz Laugh Love, was beautifully depicted on the invitation and décor, photographs of Elizabeth were placed throughout the club, and countless local businesses generously contributed to the corresponding auction that took place during the luncheon.  Every event detail was beautifully designed and flawlessly executed, right down to the napkins.

The luncheon was attended by more than 100 people, including Bronxville resident and supporter, Patrick McEnroe, who generously donated tennis lessons during the live auction.

“I am deeply touched by how incredibly supportive my friends have been, and the entire Bronxville Community for that matter, for embracing our cause in memory of Elizabeth,” said Emmie.  “They did such a beautiful job.”

Not only was the event a success, but Claudia’s outreach while planning the event led to additional support and fundraising opportunities with esteemed shoe designer Alexandre Birman and the Frédéric Fekkai Salon at the Mark Hotel.

The efforts of Claudia and Peggy are an incredible example of two individuals who recognized the tremendous unmet needs facing children with brain tumors, and decided to do something about it.

You can do something, too. Donate to the Children’s Brain Tumor Project today.

 

The Jeffers Family

The Jeffers Family is Doing Something

Sam Jeffers was in the second grade when he was diagnosed with a rare pediatric brain tumor called thalamic glioma.  His parents were told that children diagnosed with this type of tumor have a very poor prognosis.  It is a rare, inoperable tumor that is seemingly neglected by the research community.

Pediatric brain tumors are the most fatal cancer found in children.  While other childhood cancers such as leukemia have seen remarkable improvements in survival rates over the past 40 years, there has been very little research to improve outcomes for children with brain tumors because it’s so difficult to secure appropriate research funding, especially to investigate those pediatric brain tumors that are most rare.

Government grants and gifts from major foundations tend to support common cancers, where each advance benefits thousands of people. That makes sense, of course. But how can you tell a parent that not only is there no hope for their child, but that nobody is even working on it? The only way to improve the prognosis for thalamic gliomas and other rare and inoperable brain tumors in children is to study them, understand them better at the molecular level, and test innovative therapies against them.

Sam’s parents, John and Sabrina, founded the Samuel Jeffers Foundation to fund the research that children with rare and inoperable brain tumors like thalamic gliomas so desperately need.

“Our top priority is to raise enough funds to hire a full-time dedicated researcher at Weill Cornell Medicine who will study thalamic gliomas at the genomic level,” said John Jeffers.  “This isn’t just about Sam, it’s about everyone.  We have to do a better job at protecting all children.”

The Jeffers family and their extremely dedicated community of supporters have been delivering on their promise to fund a fellowship at the Weill Cornell Medicine Children’s Brain Tumor Project.  In fact, in 2018, that dream has become a reality when they made a substantial donation that will allow the lab team to acquire a dedicated researcher who will focus on this disease.  Their total contributions of almost $115,000 to the Children’s Brain Tumor Project helped the lab (1) launch the thalamic glioma registry (thalamicgliomaregistry.org), an essential tool to unite the thalamic glioma community and collect tumor tissue, (2) to hire a summer fellow who helped secure essential tumor tissue for investigation, and (3) to hire a full-time researcher in early 2019 who will take this research to the next level by sequencing the tumors, attempting to grow cell lines and avatar models, analyzing the data, conducting targeted drug screening and more.

“We don’t want any other child or family to go through what Sam went through. We want to help find a cure for these rarer types of tumors that cause so much devastation in the lives of children. That’s why we strongly support the incredible work and efforts of Dr. Mark Souweidane and the Weill Cornell Medicine Children’s Brain Tumor Project.  Together, we truly believe we can change outcomes for future families,” said Sabrina Jeffers.

You can do something, too. Donate to the Children’s Brain Tumor Project today.

To learn more about what the Samuel Jeffers Foundation is doing, visit samjeffersfoundation.org.

 

If a child’s life was in danger, you would do something… wouldn’t you?

The Children’s Brain Tumor Project Weill Cornell Medicine is proud to team up with DDB Health to present this powerful public service announcement (PSA).  The PSA is intended to raise awareness of the traumatic outcomes for far too many children diagnosed with brain tumors every year, and demand action by encouraging viewers to donate.

DDB Health generously donated time, talent and production costs to create this compelling video.  Part of the Omnicom Health Group, DDB Health brings together a like-minded community of big thinkers that are passionate about leveraging their creativity to inspire good health.  Their dedication is clearly demonstrated by their philanthropic efforts in support of the Children’s Brain Tumor Project.

DDB Health is doing something.


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
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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.

Twitter Chat – September 5

HIGH GRADE PEDIATRIC BRAIN TUMORS – RESEARCH, DISCOVERY & ROADBLOCKS

Wednesday, September 5, at 11AM (Eastern).

Weill Cornell Medicine Brain and Spine Center, @WCMCBrainSpine, invites you to participate in a Twitter chat with co-hosts Dr. Mark Souweidane, co-founder of the Weill Cornell Medicine Children’s Brain Tumor Project, David Walker, Professor of Pediatric Oncology at University of Nottingham and Chair of the Children’s Brain Tumor Drug Delivery Consortium, and The Coalition Against Childhood Cancer.  The broader brain tumor research and advocacy community will be engaging in this real-time conversation about the current landscape of pediatric brain tumors.

Special thanks to our co-hosts at the Coalition Against Childhood Cancer (@CAC2) for participating in the chat and sharing among its members who support and serve the childhood cancer community.

Follow @WCMBrainSpine@DrSouweidane , @DavidWalker40, @CAC2org and @CBTDDC as we gather online by following and posting with the hashtag #KidsBrainTumors.  The team will be interacting directly with all participants, as will various members of the pediatric brain tumor research and advocacy community.

 

Add to Calendar
09/05/2018 11:00 AM
09/05/2018 11:30 AM
America/New_York
Pediatric Brain Tumor Twitter Chat (#KidsBrainTumors)
HIGH GRADE PEDIATRIC BRAIN TUMORS – RESEARCH, DISCOVERY & ROADBLOCKS
https://twitter.com/WCMCBrainSpine

 

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.

 

Events

Nov 14, 2018: Cristian Rivera Foundation 10th Annual Celebrity Gala

Cristian always said, “I Love You Ten.” This year marks the 10th anniversary of the Cristian Rivera Foundation Celebrity Gala to benefit the CBTP in his memory.  Save the Date and be sure to follow the Cristian Rivera Foundation on Facebook for event updates.

 

Nov 4, 2018: TCS New York City Marathon

Dr. Jeff Greenfield and Dr. Mark Souweidane will be joining the Children’s Brain Tumor Family Foundation on November 4 as they run 26.2 miles through NYC to benefit pediatric brain tumor research.  Sponsor a mile at greenfieldmarathon.org or souweidanemarathon.org.

 

October 19, 2018: Play it Forward Golf Tournament

The McKenna Claire Foundation will be hosting a golf tournament including a putting contest, longest drive, closest to the pin, hole in one and a ball drop after the tournament.  Read more.

 

October 16, 2018:  No Laughing Matter, a Night of Comedy to benefit the Children’s Brain Tumor Project

The Children’s Brain Tumor Family Foundation is proud to present this laugh-out-loud fundraising event at the world famous Carolines on Broadway.  Visit nolaughingmatter.org for sponsorship information and to purchase tickets.

 

 

October 14, 2018: Head for the Cure 5K to benefit CBTP

Join us for the Head for the Cure Metro NYC 5K Run/Walk as we raise funds, awareness and hope for the Children’s Brain Tumor Project! Read more.

 

Elizabeth's Hope

Sept 29, 2018: 6th Annual Round Robin for Cancer Research

Members of the Bronxville Field Club are invited to sign up for a morning of tennis and bridge to benefit Elizabeth’s Hope.  Members can register here.

 

Sept 5, 2018: Twitter Chat with @DrSouweidane – #KidsBrainTumors 

Join us in an engaging discussion on “High Grade Pediatric Brain Tumors – Research, Discovery & Roadblocks.  Visit CBTP.org for more information and to add to your calendar.

 

September, 2018: Childhood Cancer ACTION Month

September is childhood cancer awareness month, but raising awareness isn’t enough, we’re asking our supporters to take action.  Read more.

 

September, 2018: “Go Gold” with Team Campbell

Every September, Team Campbell sells lawn signs to help raise awareness.  Please contact us at info@teamcampbellfoundation.org for availability.

 

 

August 4, 2018: Muddy Puddles Mess Fest to Benefit Children’s Brain Tumor Project

A fun and “messy” celebration of kids being kids in honor of those who can’t.  For more information, visit their website for more information and to get tickets.

 

 

CBTP Publications

 

Oncology Times 5 Sept 2018:

Biopsy Guides Treatment Options for Rare Brain Tumor

https://journals.lww.com/oncology-times/Fulltext/2018/09050/Biopsy_Guides_Treatment_Options_for_Rare_Brain.5.aspx

 

Medscape 29 June 2018:

Delivery Device Sends “Chemosurgery” to Brain Stem Tumor

https://www.medscape.com/viewarticle/898694

 

Science Translational Medicine  25 Jul 2018:

Convection-enhanced delivery of drugs for deadliest pediatric brain tumors

http://stm.sciencemag.org/content/10/451/eaau7380.full

 

 

 

Dr. Souweidane’s Trial Findings Published in Lancet Oncology

Dr. Souweidane’s Trial Findings Published in Lancet Oncology

On behalf of Dr. Mark Souweidane and the Children’s Brain Tumor Project, we are proud to announce that the Lancet Oncology has published the highly anticipated results of Dr. Mark Souweidane’s first-ever dose escalation study using convection-enhanced delivery (CED) in patients with diffuse intrinsic pontine glioma (DIPG). The milestone Phase I clinical trial, which investigated the safety of using CED to bypass the blood-brain barrier and administer a drug directly to a brain stem tumor site, resulted in no serious adverse effects and no dose-limiting toxicity; researchers conclude that the technique is safe to use in children.   

This publication validates a career-long hypothesis that Dr. Souweidane put forth more than 20 years ago, and was only made possible by the families who entrusted their children in his care by enrolling in the trial, and the donors who have provided the financial support to enable this research (read his inspiring blog here).

The results are so promising, they are expected to eventually change the landscape of future pediatric brain tumor protocols.   

View the article abstract here.

Read more here…

Dr. Mark Souweidane and patient, Brooke, who participated in the breakthrough Phase 1 clinical trial.

 

Olivia Boccuzzi Foundation Makes $15,000 Donation

The Olivia Boccuzzi Foundation Continues to Support the Children’s Brain Tumor Project at Weill Cornell Medicine with $15,000 Donation

Donations made in partnership with the Dyker Heights Athletic Association and St. Bernadette School have totaled $215,000 since 2015 as a result of the annual “Run 4 Kids” Marathon in Brooklyn

The Olivia Boccuzzi Foundation, named after a Brooklyn girl who died of a brain tumor in 2012, has continued to support pediatric brain tumor research at Weill Cornell Medicine’s Children’s Brain Tumor Project (CBTP), with a recent donation of $15,000. Olivia’s mom and brother, Enza and James Boccuzzi, presented the donation at the 2018 Run 4 Kids Marathon in Brooklyn on June 2nd, hosted by the Dyker Heights Athletic Association.

The Run 4 Kids Marathon has been benefitting the Olivia Boccuzzi Foundation for the past five years, resulting in a total of $215,000 donated to the Children’s Brain Tumor Project and related projects in memory of Olivia.

“Our community has been tremendously supportive of our family since the day Olivia was diagnosed with a brain tumor. When we created the Olivia Boccuzzi Foundation to fund pediatric brain tumor research in her memory, St. Bernadette School and the Dyker Heights Athletic Association didn’t hesitate in naming us a beneficiary of this fantastic event,” said Enza Boccuzzi, founder of the Olivia Boccuzzi Foundation. “Their continued support has enabled us to fund groundbreaking research through the Children’s Brain Tumor Project and we are just so grateful.”

Olivia was 23 months old when she suddenly began to experience neurological symptoms and was diagnosed with a PNET (Primitive Neuroectodermal Tumor) of the brainstem. She lost her battle less than one year later, shortly before her third birthday. PNET is one of the many rare pediatric brain tumors types that are studied daily at the CBTP lab.

In 2018, it remains extremely difficult to secure funding from government agencies, and there is little-to-no profit for drug companies to investigate pediatric brain tumors. That’s why the Children’s Brain Tumor Project is “Powered by Families,” and the Olivia Boccuzzi Foundation is a family-founded organization that is helping fill the funding gap in order to maintain momentum in the lab.

“We are so honored to have the continued support of the Boccuzzi Family and their community, in collaboration with St. Bernadette School and the Dyker Heights Athletic Association. It is the financial support from community-driven organizations such as these who are driving real change and advancing cures,” said Dr. Mark Souweidane, Vice Chairman, Department of Neurological Surgery and Pediatrics, Weill Cornell Medicine, and Co-founder of the Children’s Brain Tumor Project.

ABOUT THE OLIVIA BOCCUZZI FOUNDATION

The Olivia Boccuzzi Foundation is an all-volunteer 501(c)(3) tax-exempt non-profit organization. The mission of the Olivia Boccuzzi Foundation is to provide funds to medical or scientific personnel and/or institutions that are actively researching cures for pediatric brain tumors through medical trials and scientific research. With the help of our medical advisory board, which consists of world-renowned pediatric neurooncologists, we support the most viable research projects and trials in an effort to find a cure for brain tumors. The Olivia Boccuzzi Foundation is also committed to providing education and raising public awareness about pediatric cancers and the lack of funding that is currently allocated towards children with cancer from the government and other sources. We believe that increased awareness will lead to more funding and better outcomes. One hundred percent of all monies donated are used towards our mission.

ABOUT THE CHILDREN’S BRAIN TUMOR PROJECT AT WEILL CORNELL MEDICINE

The Children’s Brain Tumor Project was founded with the mission to improve the outcome for children with brain tumors by advancing scientific discovery and clinical research that focuses on targeted therapy, effective drug delivery and low treatment-related toxicity. The Children’s Brain Tumor Project has a single goal: to bring hope to the children and their families who are confronted with the diagnosis of a rare and often incurable brain tumor. Visit www.childrensbraintumorproject.org, follow us on facebook at https://www.facebook.com/ChildrensBrainTumorProject/or instagram @childrens_brain_tumor_project.

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