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.

Doctors explained that we would have 9 to 18 months with McKenna and to take her home and make the most of the time.

I immediately went in to “mama bear mode,” doing everything I could to protect my daughter from the reality of what was happening to her. Meanwhile, my husband and some amazing friends went to work searching out the most respected DIPG specialists around the world.

What we found crushed us.

Though astronaut Neil Armstrong lost his young daughter, Karen, to DIPG in 1962, protocols for treatment and life expectancy had not changed since that time. Radiation could potentially reduce symptoms for a few months, but no treatment or clinical trial had proven to have any significant effect on life expectancy for these children.

If you are a parent, I am sure you can imagine the pain of hearing that not only is there no cure available for your child’s illness, but there is absolutely no hope that she will survive long enough to find one.Now imagine the guilt you experience when you look into her expectant face as she waits to hear you tell her everything will be OK.

Our promise to her, at that point, was that we would do everything within our power to make her “feel” better during her illness, all the while hoping that there would be some miracle discovery that could give us more time — time in which a real cure might be found.

Those hopes were dashed when we lost our precious girl on July 21st, 2011 — two weeks shy of her eighth birthday and exactly six months from her diagnosis.

The days before McKenna’s passing were heartbreaking and traumatic.  Our focus was on making our daughter feel comfortable and loved, to the exclusion of all else. Because of that, we will forever be grateful to our good friend, and McKenna’s second mom, Lisa, who was brave enough to research tumor donation in the weeks preceeding our daughter’s death.

In helping us search for a viable clinical trial, Lisa had developed a relationship with Dr. Michelle Monje of Stanford University, who was accepting tumor donations for study.  Lisa arranged to have the paperwork ready should we choose to donate McKenna’s tumor.

It was something that I could not bear to consider beforehand, as I felt it was a betrayal to  concentrate on anything but her life while McKenna was with us. However, knowing that scarcity of tumor tissue was one of the reasons for lack of progress in the study of DIPG, as McKenna was taking her final breaths both my husband and I agreed to the donation.

We really didn’t know what would become of the tumor donation at the time.  We just knew that the mechanisms of this disease were still a mystery, and that we would do anything we could to save the next child and family from the pain we were experiencing.

In the months following McKenna’s death, we learned that a cell line had been developed from her tumor. In one of our first acts as a foundation, we made sure that her cell line, and others, were made available without charge to researchers around the world for study. It was our way of honoring McKenna’s courageous battle by doing whatever we could to fight this evil monster of a disease.

We were fortunate. Our friend knew us well enough to judge what our reaction would be when asked whether we would want to donate. Tumor donation is not an easy topic to broach with parents and loved ones.  Because time is of the essence in the viability of the donation, arrangements have to be made in advance of a child’s passing.  However, parents are trying to hold on to Hope, and donation is a subject not many want to talk about while their child is still fighting for their lives.  I know I couldn’t.

But it is an important topic to bring forward.  Working with children and families through our foundation in the years since McKenna’s loss, I am now often the one who must try feel out parents’ wishes, or help other family members or friends do the same.  It is not easy.

I have learned never to underestimate the strength of parents in this situation.  There are times I judged wrongly whether I thought it would be the parents’ wishes to donate, and have had those families tell me they wish I would have stepped forward and said more.  I will forever regret those mistakes, but because of them I have learned that it is better to give parents an option, even if doing so is painful.

I will never forget going to the lab and seeing McKenna’s cell line under the microscope for the first time.  Holding the petri dish in my hands, I sobbed.  Grief, anger, regret, and guilt all churned to the surface.  All I could think was what was left of my child was living in that dish, and it was the part that killed her.  Part of me wanted to throw the dish against the wall, to destroy the beast that had destroyed my daughter.  It would be so easy.

But another part of me was so proud.  My girl was a fighter, and here she was, fighting still, for the children who would follow in her footsteps.  Her little life meant more than I could ever imagine, and though we would do anything to have her back, knowing that her time here is making a difference brings us some modicum of peace.

What we have come to learn is that we were lucky in that regard.  There is no guarantee that a cell line will be developed, and in fact most won’t.  But it is important to note that something is learned from every donation.  A new piece of the puzzle is found and fitted in to place.

And with every piece, the picture becomes more clear. Because of the increasing number of donations made by families in the last 7-8 years, we are seeing incredible breakthroughs in the understanding of DIPG for the first time ever.  Researchers are beginning to speak of increased time and quality of life, words that were never uttered when our daughter was diagnosed.  These children, whose tumors were donated, have produced a new source of light, shedding the first glimmers of Hope on this disease for those yet to be diagnosed.  McKenna’s light still shines.

Learn more about the legacy tissue donation program at Weill Cornell Medicine’s Children’s Brain Tumor Project.

Mckenna and Jordan

McKenna Claire Wetzel (left) and her big sister Jordan

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

Family Corner: Brenda Ries

February has always been special for me…it’s the month of my birthday, it’s when I met my husband 23 years ago, and on Valentine’s Day 2007 my second son, Sean, was born, making our family of four complete. But in 2012, February lost its charm in a way I never could have imagined. Eight days before his fifth birthday, Sean was diagnosed with a dysembryoplastic neuroepithelial tumor (DNET) in the left side of his brain. Told by doctor after doctor that his tumor was inoperable due to its size and location, we were not given many good options for treating Sean: surgery that would likely leave him with a devastating brain injury; chemotherapy that might not even work on his type of tumor; or radiation, which can have devastating long-term side effects on the developing brain of a 5-year-old child. Read more

Family Corner: Brothers and Sisters, Fall 2015

When a child is diagnosed with a brain tumor, an entire family is affected. We asked some of the children’s siblings to share their unique perspective on having a brother or sister diagnosed.

Gavin Campbell drawingGavin Campbell
Gavin was a toddler when his brother, Ty, was diagnosed with AT/RT, and just three and a half when Ty passed away. Now in kindergarten, Gavin made a drawing that shows Ty in a wheelchair and himself as Spiderman. “I got in a fight on the bus because the kids told me I don’t have a brother,” he says. “I yelled at them and said ‘Yes I DO!’ I hate the bus.”

Read more