Running for Joey

On February 7, 2016, my 8-year-old son Joey gained his wings after a 14-month battle with Glioblastoma Multiforme, a deadly brain cancer. Joey was smart, kind, extremely funny, incredibly athletic, and just the best kid all around. His beautiful blue eyes and bright smile lit up every room, and he was remembered everywhere he went.

Watching your child go through cancer treatment is something that changes your life forever. As a mother I would have traded places with Joey in a heartbeat, and I wished that I could every single day.

I remember being stuck in traffic on our way home after a chemo treatment and Joey being very sick while we sat there. He looked up at me with tears in his eyes and said, “Mommy why is this happening to me?” Sadly, I had no answer for him because really, there isn’t one. And it broke my heart to have to tell him that everything would be all right when clearly, it wasn’t.

Months later, while he was home on hospice care, I promised him that I would do everything I could to help find a cure for this disease—that I didn’t want to see any more families in the position that we were in. On November 3, 2019, I ran the New York City Marathon with the Children’s Brain Tumor Family Foundation in honor of my angel Joey. In honor of Sean, Caitlin, Allie, Juliana, Daryn, Ty, and all the children who have battled brain cancer. It was hard, emotional, rewarding, and so surreal! I had the best supporters of family and friends along the entire route and I am so thankful for each one of them cheering me on and giving me motivation to keep on going.

At Mile 16 I saw my biggest supporters. It was so great to see the smiling faces of my husband, Joe, and my son Robbie. They stood by me every step of the way during training, and they cheered me on there and again at Mile 25. I have the best video of Robbie saying, “Let’s go Mommy! Let’s go Mommy!” that I will cherish forever.

I am proud to say that I raised $12,500! I am in awe of the generosity shown to our mission to help fund pediatric brain cancer research, and I am extremely grateful to every person who donated.

Some days I still can’t believe that I crossed that finish line! As I ran through the streets of New York City, complete strangers were screaming, “Go Joey’s Mom! You got this Joey’s Mom! Joey’s Mom you’re awesome!” It was a feeling that I can’t really describe but hearing his name for the 6.5 hours it took me to finish warmed my heart so much. I love you and I miss you, Joey.

 

If you are interested in running the NYC Marathon in support of the Children’s Brain Tumor Project, email Brenda@cbtff.org

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.