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.

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.

 

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.

 

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.

 

 

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

Support H.Res.69 – The National DIPG Awareness Resolution

H.Res.69 – The National DIPG Awareness Resolution is the first step toward generating widespread action, which leads financial support for funding the best research.  That’s why the Children’s Brain Tumor Project supports H.Res.69 to officially establish DIPG Awareness Day as May 17 (which also happens to be our very own Caitlin Downing’s birthday).

H.Res.69 was recently introduced to congress by Rep. Stephen Knight (CA) and we are asking our community to put forth a concerted effort via social media sharing and letter-campaigning to support these efforts.

As written in the resolution, H.Res.69 would ensure that congress:

(1) supports the designation of “DIPG Awareness Day”;

(2) encourages all people of the US to become more informed about DIPG and the current challenges to the medical research system in designating sufficient research funding for pediatric cancers;

(3) supports expanded research to better understand DIPG, develop effective treatments, and provide comprehensive care for children with DIPG; and

(4) encourages the National Cancer Institute to elevate their consideration of mortality rate of a type of cancer as well as the life years lost as significant factors considered during the grant application process.

Please write your local representatives and ask them to support H.Res.69 and share via social media with the hashtag #HRES69 to encourage your followers to do the same.  Visit https://www.house.gov/representatives/find-your-representative to find your local representative, feel free to use your own variation of the letter template below, and send it off! Thank you so much for your support.

 

++++++++++++++++++++++++++++++

 

To the Honorable Member of the United States House of Representatives, and staff,

In 50+ years, of clinical observation, there has been no change in the outcome for the hundreds of children diagnosed with DIPG—diffuse intrinsic pontine glioma.  Sadly, parents must be resigned to witnessing the death of their beloved children in utter helplessness, not knowing exactly when, how, or ultimately why, they will die. With treatment, the median survival time is 9 months post diagnosis. The devastation of this experience cannot be understated, and there is a strong movement across the US for a DIPG Awareness Day and greater consideration for these children, as written in H.Res.69

Parents have been expected to accept that there are no solutions for their children because their numbers don’t warrant the investment; now we parents are asking our Representatives in Congress for help.

The DIPG Awareness Resolution represents the acknowledgment of funding loopholes through which our children are lost in our medical research system, and the desire for greater consideration for the lives of our children facing certain death. You are our greatest hope for change. A DIPG Awareness Day represents something that our families never have from day one: HOPE, hope that we are actively seeking solutions for them because their lives matter, that they have a certain value deserving of recognition and prioritization.

Thank you for your consideration, as this was written by parents, for these children and their families, with Congressman Steve Knight (R-CA-25). We feel there ought to be acknowledgement and conversation about what we can do together to find solutions to funding urgently needed research for children facing certain death. H.Res.69 offers a practical avenue to do just that, not by imposing blame but in welcoming collaboration for effective solutions and promising ideas.

The text is brief and to the point for your consideration. From our National Community, we thank you with all of our hearts

Very Truly Yours,

 

 

As written by:

Janet Demeter
DIPG Advocacy Group, Organizer
818-400-2724, jacksangels1@gmail.com
32520 Wagon Wheel Rd., Agua Dulce CA 91390
Adam Brooks, adam.brooks@mail.house.gov 225-1956
Representative Steve Knight (R-CA-25) Molly Fishman, molly.fishman@mail.house.gov 225-3531
Representative Jackie Speier (D-CA-14)