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.

 

 

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)

Family Corner: Kathy Arabia

It is always a heartwarming and emotional experience to meet with other families who have lost a child to brain cancer. I had the true pleasure to connect with a group of parents, all of whom had lost a child to the rare brain cancer gliomatosis cerebri, at the Second International Gliomatosis Cerebri Conference, which was recently held at the National Institutes of Health.

The powerful emotions we felt were highlighted by the fact that we were there with a number of the brightest neurosurgeons, neuro-oncologists, researchers, and others who were fully committed to learning more about this cancer, sharing research, and finding effective treatments so no other families would have to go through such a loss. Read more

Family Corner: Emmie and Mike Minter

On New Year’s Eve 2010 our lives took an unimaginable turn: A doctor told us that our seemingly healthy 19-year-old daughter, Elizabeth, had inoperable brain cancer. We were advised to take her home, find palliative care, and expect her to succumb to her disease within the year. Words cannot describe our devastation, despair, and anger. How is it possible in this day, when we send space probes to the edge of the solar system and develop driverless cars, that there can there be no effective treatment options? There was literally no hope—only prayers for a miracle. Read more

Family Corner: Barbara Zak Anderson

They say that life is a highway and its milestones are the years,
And now and then there’s a toll-gate where you buy your way with tears.
—Joyce Kilmer (“Roofs,” 1917)

September is all about milestones, with its back-to-school firsts and the excitement of new beginnings. This year we have a special milestone: After 40+ years in my childhood home, including 14 years raising our family in it, the Andersons have moved! That house was a home base we had only ever planned on expanding, but Hurricane Irene five years ago, then Sandy a year later, was the beginning of the end. We began to mourn our home then, but we never could have imagined what was yet to come. I’ve learned a lot in the past five years about “the best laid plans.” Read more

Family Corner: Kelly Fisher

“Your marriage must be so strong.”

I have heard this statement often over the past three years. My 3-year-old daughter, Allie, died of gliomatosis cerebri in June of 2013. My husband, Kyle, and I are still together, and our marriage has survived this tragedy. But the truth is that it has been extremely difficult to rebuild our lives after cancer stole so much from us. Read more