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.

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).

Children’s Brain Tumor Family Foundation

These families are doing something.

When your child is diagnosed with a brain tumor, the impact on the entire family can be debilitating. After experiencing such trauma first-hand, a handful of influential families banded together to make a difference with the formation of the Children’s Brain Tumor Family Foundation (CBTFF).

The CBTFF is a volunteer-based nonprofit organization dedicated to funding research.  The organization was founded and is led by a group of families that have been united by the tragic diagnosis of a rare brain tumor.  All of whom have great faith in the work that is underway at the Weill Cornell Medicine Children’s Brain Tumor Project.

Although these families are united by tragedy, they are also a great support network to one-another and other families who are impacted by a pediatric brain tumor diagnosis.

The Children’s Brain Tumor Family Foundation is led by:

  • Cheering for Caitlin (The Downing Family, in memory of Caitlin)
  • Team Little Owl (The Fisher Family, in memory of Allie)
  • Team Joey (The Clayton Family, in memory of Joey)
  • TEAM Sean (The Ries Family, in honor of their fighter, Sean)
  • Team Juliana (The Donnelly Family, in memory of Juliana)
  • What’s Your Fight? (The Clark Family, in memory of Daryn)

To learn more about these amazing families, visit http://cbtff.org.

These families are helping to DO SOMETHING.  You can, too.  Share this post.  Make a donation.  Attend an event.  Or… join the team and run the NYC Marathon!

Last year, the Children’s Brain Tumor Family Foundation raised $60,000 for the Children’s Brain Tumor Project as five members of their team were challenged, pushed and ultimately rewarded with the incredible feeling of crossing the finish line in Central Park.  You can join the team in 2019!  Email Brenda@CBTFF.org if interested.

 

 

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.

Matthew

Matthew is Doing Something

Matthew Bernstein lost his younger brother Zachary, to a terminal brain tumor in 2014.  Matthew was only in the eighth grade at the time, but experiencing such trauma changed the course of his life forever and inspired him to do something that would help children like Zachary in the future.

In fact, Matthew spent the summer of 2016 working in the lab at the Children’s Brain Tumor Project Weill Cornell Medicine, before going off to study pre-med at Brandeis University this September.  His time in the CBTP lab was funded by the Samuel Jeffers Foundation, and his work helped kick-start the lab’s efforts to build a database of thalamic glioma samples – data that has proven to be invaluable in the lab’s current research efforts.

Matthew has been involved in the field of pediatric brain cancer since Zachary’s death. In addition to his scientific endeavors, he is also the Youth Volunteer Coordinator for the Fly a Kite Foundation, which was co-founded by his parents, David and Deena Bernstein, to support other families facing DIPG.  He hopes to join the Board of Directors post-graduation, as well.

“When [Zachary] was sick, I saw a lot of oncologists, physical therapists, anesthesiologists and what they do,” he told the Long Island Herald. “Because of my experiences, I was exposed to the neurological field and surgery, so I’m leaning toward that now.”

Matthew is a highly focused individual who wants to make a difference in the lives of children diagnosed with brain tumors in the future.  Not only has he volunteered with the Children’s Brain Tumor Project, he also worked as an intern under the direction and mentorship of Dr. Oren Becher, Assistant Professor of Hematology-Oncology; Preston Robert Tisch Brain Tumor Center, Duke School of Medicine.

“My overall objectives are to learn and experience life and soak in as much as I can while navigating my academics, personal journey and career path,” says Matthew. “I will take what I learned from working in the labs and working at Fly a Kite as a foundation for future opportunities and exposure to the world of science and research.”

Matthew Bernstein is doing something.  Will you?  Donate to the Children’s Brain Tumor Project today.

 

 

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?


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