September 14-15, 2023
Weill Cornell Medicine
New York City
Made possible by the following GC Family Foundations who sponsored this scientific research conference.
This united group of family-founded associations from around the world have been impacted by this devastating disease and are the driving force of this conference.
Union Des rayons de soleil - a union of three foundations - France
Created in 2010 by the family and friends of 14-year-old Franck, who died of gliomatosis cerebri, the association is investing in cancer research for children, but also in supporting families affected by this disease.
The association donates 100% of funds collected, mainly by organizing fun outings for children and their families (zoos, amusement parks …), contributing to the improvement of hospital conditions, but also by financially supporting families in trouble.
Founded by her family in 2020, Nina un rayon de soleil was created to support sick children, their families, doctors and researchers in the fight against childhood cancer, and more specifically against gliomatosis cerebri, a very rare brain cancer. 70% of the associations donations are donated to research programs.
Mathys, a shining 5-year-old boy full of life, always laughing, left us on October 9th, 2015. For his memory, his parents decided to create the association “Mathys, un rayon de soleil”, on December 29, 2015, 81 days after leaving.
The association has three objects. The first and most important is to fund specific medical research on cerebral gliomatosis. The second is to inform and educate the general public about this totally unknown disease while we are in the twenty-first century. The third is to support children with cancer and their families in hospitals to bring “color” to rooms as well as to the everyday medical world.
To date, this organization has been able to finance a nutrition project at the University Hospital of Angers and has also funded medical research on pediatric tumors, still at Angers University Hospital.
Formerly known as Elizabeth's Hope, the mission of the Children's Brain Tumor Project Foundation is to provide funding for cutting-edge personalized medicine to children and adolescents with rare and operable brain cancers at Weill Cornell Medicine.
Rudy passed away in 2013, on his 26th birthday. He has been an inspiration to his family and friends. The Rudy A Menon Foundation was created to help fund the investigation of gliomatosis cerebri and other rare brain cancers. This foundation works with the Institute of Cancer Research (ICR) in London, United Kingdom, with Professor Chris Jones and his team who are working on multiple research projects.
The first PhD student for GC in the world has been sponsored by the Foundation in Chris Jones lab. She is completing her thesis later this year and has made great progress in identifying specific details about the disease. The Foundation is now sponsoring the second PhD student at ICR starting in October 2023.
Izas la princessa guisante - Spain
The association Izas, la princesa guisante, was created in Huesca (Spain) in 2013 after the rapid death of Izas at the age of 3. Its firm purpose was to promote research, enhance the donation of tumor tissue for it, create a network of affected families, fight for the rights of the sick children, and inform the medical community, families and society of GC, a cancer with terrible consequences.
In her few years of life, Izas, la princesa guisante has already managed to create a family forum, support and inform in new cases of GC, accompany relatives, and begin to investigate the disease. This research is a study started in August 2013 and conducted by doctors Ofelia Cruz and Andrés Morales, from the Pediatric Oncology Unit, and Ángel Montero Carcaboso, from the Development Tumor Laboratory of the Sant Joan de Déu Hospital in Barcelona.
The Joshua Bembo Project is a non-profit organization created in memory of Joshua Bembo, who lost his 15 month battle with Gliomatosis Cerebri in 2013 when he was 9 years old. The aim of this association is to give hope to children diagnosed with rare and inoperable brain tumors, such as the one that took Joshua’s life, by organizing fundraising events to support research efforts to find a treatment. He left a huge legacy of hope, as he donated his brain and spinal cord to the Children’s National Medical Center in Washington DC with a strong desire to help find the cure. Joshua's tissue was shared with Weill Cornell Medical College to support its GC research effort.
Elizabeth's Hope - USA
In 2010, Elizabeth Minter, a second-year university student, was diagnosed with gliomatosis cerebri at age 19. Elizabeth passed away in 2012, only 17 months after diagnosis. Her brain was donated to research, perhaps her greatest and most lasting gift for the search for better treatment options and a cure. Before passing away, in 2011, Elizabeth and her family worked with neurosurgeon and researcher Dr. Jeffrey Greenfield to launch the Elizabeth’s Hope Foundation and start the Children’s Brain Tumor Project at the Weill Cornell Pediatric Brain and Spine Center in New York. They have raised hundreds of thousands of dollars so far on campus, marathons and even on top of Mount Kilimanjaro. Elizabeth's Hope is now part of the Children's Brain Tumor Project Foundation.
Patrick Bayly Foundation - Peru
The Patrick Bayly Foundation is inspired by a mother’s love for her son, Patrick Bayly Marsano, who bravely fought against Gliomatosis Cerebri from 2012 to 2016.
It was born with the purpose of creating an organization with compassion and social solidarity to help people who suffer, either because they are in a situation of extreme poverty or because they suffer from a disease as terrible as cancer. The Bayly family has donated to the Peruvian University of Medicine Cayetano Heredia to provide radiotherapy treatments with the latest technology to people of lower resources through the Radiotherapy and Diagnostic Imaging Unit “Patrick Bayly Marsano”.
In March 2019, FYM made a major donation to the Weill Cornell Medicine Hospital to fund Dr. Greenfield’s research on Gliomatosis Cerebri and other rare brain tumors.
AYJ Fund - USA
AYJ are the initials of Anna Yan Ji, adopted in China at 9 months and diagnosed with GC at 13 at Boston Children’s Hospital. She was treated at the Dana Farber Cancer Institute for over three years until she passed away at age 16. The mission of AYJ Fund is to bring smiles to children with cancer, to connect children with school and friends through technology, and to support research of Gliomatosis Cerebri and other brain cancers.
4th International GG Conference
Weill Cornell Medicine
1300 York Ave, New York, NY 10065
Families and Foundation Session
Reception - all attendees
The 4th International Gliomatosis Cerebri Conference will be held on September 14 -15, 2023 at Weill Cornell Medicine in New York City. Gliomatosis cerebri (GC) is a rare pattern of brain tumor dissemination, for which there is no cure.
This conference is organized with the purpose of fueling research collaboration to address this rare disease type amongst global research leaders who share the goal of improving outcomes for GC patients.
The two-day conference is financially supported by a united group of family-founded associations from around the world who have been impacted by this devastating disease. These families have been driving collaboration and research for ten years now and are committed to funding research and making a difference for other children and families diagnosed with GC.
Several international research centers will be represented at the conference in New York to continue the coordinated investigation of this rare disease dissemination with the goal of improving patient care and outcomes. These efforts were first set into motion in 2015 when the international congress on gliomatosis cerebri research first met at Curie Institute in Paris, France, and it continues to gain promising momentum.
Without research, effective treatments will not be available for gliomatosis cerebri patients.
This international congress of GC research is critical in advancing such research and creating new hope for GC families.
CO-CHAIR: Jeff Greenfield MD, PhD
Vice Chairman of Academic Affairs and Associate Professor, Department of Neurological Surgery and Pediatrics; Co-director, Children’s Brain Tumor Project
New York Presbyterian/Weill Cornell Medicine, Memorial Sloan Kettering Cancer Center, New York Presbyterian/Columbia University Irving Medical Center
CO-CHAIR: Andrés Morales La Madrid MD, PhD
Chief of SJD Pediatric Cancer Center Barcelona project. Clinical Director, Department of Oncology. Clinical Director, Neuro-Oncology Program.
Sant Joan de Déu Children’s Hospital. Barcelona, Spain
CO-CHAIR: Chris Jones PhD
Team Leader - Glioma Team
Professor of Childhood Brain Tumour Biology, Preclinical Chiar of the International CONNECT consortium
The Institute of Cancer Research, United Kingdom
CO-CHAIR: Mariella Filbin, MD, PhD
Research Director of the Pediatric Neuro-Oncology Program, and the Co-Director of the Brain Tumor Center of Excellence at Dana-Farber Cancer Institute and Boston Children’s Hospital, Assistant Professor in Pediatrics at Harvard Medical School.
We are so grateful to each of our sponsors who have made this conference possible.
If you are a PROFESSIONAL IN THE HEALTH SECTOR and have received an invitation to attend the 4th International Gliomatosis Cerebri Conference at Weill Cornell Medicine in New York City, September 14-15, 2023, please complete the following registration form:
If you are a FAMILY MEMBER/FOUNDATION or other guest please complete the following registration form:
A block of rooms has been reserved at The Empire Hotel in NYC.
The Empire Hotel is a classic New York experience located on Manhattan’s Upper West Side. The hotel is near Lincoln Square and New York’s beautiful Central Park. It is a nice 1 mile walk to Rockefeller Center and Times Square. Be sure to take in a view of the Upper West Side Skyline and Central Park from the Empire Rooftop Bar & Lounge.
Scientific Professionals – Registration information included on the registration link.
Families/Foundations – Use this link: https://be.synxis.com/?Hotel=40996&Chain=30656&config=Corp&arrive=2023-09-13&depart=2023-09-15&adult=1&child=0&group=GCCONFER
The Empire Hotel
44 West 63rd Street
New York, New York 10023
A historic date. This first international meeting was organized and funded by five associations of European and North American GC families. It brought together researchers and medical experts, from centers dedicated to pediatric and adult neurooncology. The congress was able to lay the foundations to fight against this rare type of brain tumor. During the congress the first steps were taken to investigate the disease at an international level and provide ideas to finance this process.
National Institutes of Health
Upon conclusion of this conference, it was agreed that the approach might not have to focus so much on molecular characteristics, but on the mechanisms that make these tumors so migratory and aggressive. A focus to be considered, is what kind of interaction exists between the tumor cells and the tumor microenvironment. In addition, preclinical and clinical treatments were prioritized, projects that should provide answers in the following years.There was also commitment that laboratories would continue working on the establishment of GC cell lines and animal models.
Sant Joan de Deu Hospital
Following this conference, GC Family Foundations Izas, la princesa guisante, Franck, Un rayon de soleil, the AYJ Fund, Mathys, Un rayon de soleil, and Nina, Un rayon de soleil, joined forces and awarded a 300,000 euro competitive grant to a research project “Targeting cellular connectivity in gliomatosis cerebri” led by Chris Jones, PhD, of The Institute of Cancer Research, London, who will work in collaboration with Mariella Filbin, Dana Farber Cancer Institute, Boston; Mara Vinci, Ospedale Pediatrico Bambino Gesù, Rome and David Castel, Gustave Roussy Paris.
New York City Information
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