Anthony

Advocating for Change

From the desk of Anthony Trimarchi.

My daughter, Taylor, was diagnosed with a brain tumor in 2017. That was the first among many moments of complete shock as my family and I were thrown into discussions around treatment options, survival rates and the long-term side effects of aggressive surgery, chemotherapy and radiation. The initial shock was followed by a series of additional eye-opening revelations as I began researching treatment options, looking for advancements in the science so I could select the most innovative protocols available to her.

What I discovered, instead, was a tremendous lack of awareness and funding for childhood cancers in general, and unique challenges in the research landscape for pediatric brain tumors, in particular. My eyes were opened in an instant when I connected with various medical teams, researchers, and families, all of whom echoed the same message about the need for increased research. I couldn’t believe what I was hearing, so I began hosting fundraisers of my own in an effort to help support the research being done by the Children’s Brain Tumor Project at Weill Cornell Medicine to pay tribute to my daughter and all she had endured.

Thankfully, Taylor has finished treatment and she is doing extraordinarily well, but that doesn’t mean I’ve lost sight of the thousands of children with brain cancer who have not had/may not have the same outcome. Instead, I remain an active advocate. I recently worked closely with local representative Nita Lowey [D-NY17] to fight for the inclusion of a formal request for increased research funding in the appropriations committee report accompanying H.R. 2740, a bill that sets overall spending limits for the next year and was passed by the House of Representatives on June 19, 2019.

The bill is now under review by the senate.

SpendingTracker.org estimates H.R. 2740 will add $43.8 billion in new spending through 2029, which reinforces the notion that the inclusion of a statement specific to pediatric brain tumor research support may influence an increased government spend in this area. I am not alone in these efforts, and I am so proud of everything that has been accomplished by advocates in the childhood cancer community — where the parents of children in treatment are often running marathons, hosting auctions and selling silicone bracelets in efforts to fund the research that may help their children. That alone demonstrates just how little government funding is currently available for childhood cancer research.

Less than 4% of the national budget for cancer research is designated to research all pediatric cancers, a percentage which gets even smaller when divided across the seemingly countless types of cancers that are unique to children. That leaves a tremendous gap to fill by nonprofit organizations large and small such as the Children’s Brain Tumor Family Foundation, the Cristian Rivera Foundation, the McKenna Claire Foundation and the Ty Louis Campbell Foundation, hundreds of which support the majority of these research projects through tireless fundraising efforts.

With input from my daughter’s neurosurgeon, Dr. Mark Souweidane, Vice Chairman of Neurological Surgery and Director of Pediatric Neurosurgery at Weill Cornell Medicine, I submitted the following paragraph for inclusion. The statement can be found on page 81 of the appropriations committee report, where specific references are made pertaining to the National Institute of Health (NIH).

The committee recognizes that brain cancer remains the most fatal of all pediatric cancers. Despite progress in other diseases, pediatric brain cancer survival rates have not improved for decades and has lagged behind the strides made in other cancers. The majority of children who survive may experience lifelong impairments and disabilities that result from high levels of toxicity associated with treatment. The committee strongly encourages NIH to expand funding on research on pediatric brain cancer, including but not limited to drug delivery methods and new therapies with reduced levels of toxicity and long-term complications.

There are few official statements addressing pediatric brain tumors that are as clear and accurate as the one that congresswoman Nita Lowey helped deliver to the NIH. It seems anyone reading these simple facts would be compelled to do more, and I will not stop advocating until they do.”

Anthony is doing something.

Dr. Souweidane to Host “Novel Drug Delivery Systems in CNS Tumors” at PBTC Symposium

Dr. Mark Souweidane, a dedicated and active member of the Pediatric Brain Tumor Consortium, is hosting a symposium on Novel Drug Delivery Systems in CNS Tumors.  The meeting will take place in advance of the broader annual PBTC meeting symposium on Sunday, October 6, 2019, 3 – 7PM MST at the Grand Hyatt Hotel in Denver.

The symposium will focus on the translational aspects of these novel systems, and the overall goal is to discuss potential future clinical trials using new delivery systems, including a possible trial concept, contemporary pre-clinical and clinical experiences, and barriers to development.

Topics will include direct drug delivery, intrathecal drug delivery, intra-arterial drug delivery, magnetic resonance guided focused ultrasound, and laser interstitial thermal therapy.  Participants will include clinical trialists, neuro-oncologists, neurosurgeons, radiation oncologists, basic and translational scientists and those with experience in clinical trial regulatory aspects necessary for moving these novel concepts forward.

“This meeting is essential if we want to collaborate on various drug delivery approaches and make them available to children via clinical trial on a global scale,” said Dr. Mark Souweidane.  “We will be discussing next steps in clinical trial design, and some of the roadblocks we are facing in moving these collaborative efforts forward, including funding.”

Founded by the NCI in 1999 and consisting of 12 participating academic centers and children’s hospitals across the country, the PBTC is a multi-disciplinary cooperative research organization devoted to the study of correlative tumor biology and new therapies for primary CNS tumors of childhood.

To help fund these efforts, you can donate here.

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.

 

CBTP Manuscript Accepted by Oxford Academic Neuro-Oncology Advances

A new research study from the CBTP lab entitled “Combined Targeting of PI3K and MEK Effector Pathways via CED for DIPG Therapy,” was published in Neuro-Oncology Advances on May 29, 2019. The published manuscript, submitted by Dr. Uday Maachani (Dr. Souweidane Lab) on behalf of the entire research team, showed the results of a comprehensive study of midline gliomas including diffuse intrinsic pontine gliomas (DIPG), and the relationship between amplified phosphatydylinositol 3-kinase (PI3K), mitogen-activated protein kinase (MEK), and the development of these particular tumor types.

In this comprehensive study, the research team tested both PI3K inhibitor ZSTK474 and MEK inhibitor trametinib, alone and in combination in vitro  and in vivo, using various delivery methods.

The results showed that combination treatments were found to be synergistic with dosing across the  cell lines tested, and significant tumor suppression was seen when given systemically against a subcutaneous DIPG model, and when given via convection-enhanced delivery (CED) in an intracranial DIPG mouse model.  Data indicates that ZSTK474 and trametinib combination therapy inhibits malignant growth of DIPG cells in culture  and in animal models, prolonging survival. The results warrant further investigation and the team is excited by the potential for a promising new combination approach to treat DIPG via CED.

View Article Abstract Here

Download Full Article Here

Funding: This research was supported in part by Cristian Rivera Foundation, McKenna Claire Foundation, The Lyonhearted Foundation, Christian Koehler Foundation, Brooke Healey Foundation, Fly a Kite Foundation, Children’s Brain Tumor Family Foundation, Joshua’s Wish, Lily LaRue Foundation, and by the Alex Lemonade Stand Foundation’s Pediatric Oncology Student Training Grant (UT), and American Brain Tumor Association Medical Student Summer Fellowship in honor of Collegiate Charities Dropping the Puck on Cancer and Super Lucy (RC).

Tara

Tara is doing something…

It was a routine eye exam that led to the discovery that Tara Gordon Lipton’s six-year-old son, Walker, had a brain tumor. Life was turned upside down in an instant.

After being diagnosed with medulloblastoma, Walker’s tumor was removed and followed up with an intense series of treatments that saved his life – and left a lasting impact on the Lipton family. Today, Tara continues to help others impacted by this terrifying diagnosis through her work with the Children’s Brain Tumor Project among other philanthropic efforts.

“Walker is my youngest of four children. Upon diagnosis, I became fiercely protective of my child, stopping at absolutely nothing to ensure he was getting the best care,” said Tara.

His tumor was surgically removed by Dr. Mark Souweidane, and Dr. Jeff Greenfield, Weill Cornell Medical Center, and he followed up with an effective, albeit brutal, treatment protocol.

“It was hell. I had to resist the urge to run away every day we walked into clinic, but then when the elevator doors opened to reveal hundreds of kids on the oncology floor I realized that I can never turn a blind eye to this shocking reality,” Tara said. “I vowed that once we got through our own journey, I would continue to help others impacted by the disease.”

Today, Tara advocates for more research funding that will advance treatment options for children with rare and inoperable brain tumors. On October 16, 2018, Tara chaired “No Laughing Matter – A Night of Comedy in Support of the Children’s Brain Tumor Project” at Carolines on Broadway.  The fundraiser was a huge success with a hilarious line-up (including Ali Wentworth, Jessica Kirson and Jim Gaffigan), raising $450,000 for research. Visit nolaughingmatter2018.org for more information.

“I am forever indebted to Dr. Greenfield and Dr. Souweidane for saving my son’s life. I want to enable them to give that gift to more families impacted by this disease.”

Tara is doing something.  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.

 

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

UPCOMING EVENTS:

September, 2019: Childhood Cancer ACTION Month

September is childhood cancer awareness month, but raising awareness isn’t enough, we’re asking our supporters to do something.

 

September, 2019: “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.

 

 

October 22, 2019: No Laughing Matter

Save the Date for our second annual “No Laughing Matter” comedy night fundraiser at Carolines on Broadway.  Visit nolaughingmatter2019.org for tickets and sponsorship information.

 

Nov 13, 2019: Cristian Rivera Foundation 11th Annual Celebrity Gala

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

 

 

 

PREVIOUS EVENTS:

August 3, 2019: Muddy Puddles Mess Fest

For the seventh year, two thousand supporters showed up to jump in muddy puddles, race the slopstacle course, throw whipped cream pies and splatter paint carelessly in honor of those who can’t.  This year, the Muddy Puddles Project will be able to donate more than $40,000 to the Children’s Brain Tumor Project as a result.

 

 

June 22, 2019: Bronxville 5K with Head for the Cure

Previously known as the “Bronxville Road Race,” our charity partners at Head for the Cure hosted the return of a 5K walk/run in Bronxville to benefit the Children’s Brain Tumor Project at Weill Cornell Medicine in loving memory of Elizabeth Minter (Bronxville High School Class of 2009).  Read more.

 

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.