IZAS, LA PRINCESA 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.
COORGANIZING ASSOCIATION :
FRANCK, UN RAYON DE SOLEIL (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.
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 until she passed away at 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.
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.
THE RUDY A MENON FOUNDATION (UK)
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, where Professor Chris Jones and his team are developing an innovative research project.
THE JOSHUA BEMBO PROJECT (USA)
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. Recently, his tissue was shared with Weill Cornell Medical College to support its GC research effort.
MATHYS, UN RAYON DE SOLEIL (France)
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.
WITH THE SUPPORT OF :
FE Y MISERICORDIA (Peru)
Fe y Misericordia (FYM) was created in 2013, inspired by a mother’s love for her son, Patrick Bayly Marsano, who bravely fought against Gliomatosis Cerebri from 2012 to 2016.
FYM 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. FYM currently has an agreement with 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 an important donation to the Weill Cornell Medicine Hospital to fund Dr. Greenfield’s research on Gliomatosis Cerebri and other rare brain tumors.
ANNE, UN RAYON DE SOLEIL (France)
The association is born from the story of a little girl from Ardèche, Anne, 8, who passed away to gliomatosis cerebri in 2011 after 12 months of hard fighting. She wanted this association to continue its action beyond its history. The main objectives of this association are to collaborate in the investigation of the disease (and other rare diseases), to support sick children and their families, to help bereaved families and to sensitize society to minor diseases such as this one. Join forces to fight.
COLLABORATING MEDICAL INSTITUTIONS:
HOSPITAL SANT JOAN DE DÉU (Barcelona, Spain)
Private non-profit institution, with a vocation for public service, created in 1867, then the first children’s hospital in Spain. Since 2004, Hospital Sant Joan de Déu has been immersed in a process of change that has allowed it to move from being a general hospital of local scope to a center of high specialization in Pediatrics and maternal health of international scope. It has more than 600 specialists trained in hospitals around the world who collaborate in national and international medical networks.
It is a reference hospital in Pediatrics, Obstetrics and Gynecology, and in areas of high specialization such as Neurosciences, Neonatology, Oncology or Cardiosurgery. It attends more than 120,000 emergencies, 25,000 inpatient admissions and 200,000 outpatient admissions every year, combining the latest technology with personalized assistance based on its values of hospitality and solidarity.
Thanks to the funds raised by the campaign “Para los valientes (For the brave ones)”, in the first months of 2018 the construction of the largest research and treatment center for pediatric cancer in Europe began. The new SJD Pediatric Cancer Center Barcelona will attend up to 400 patients a year. Sant Joan de Déu Hospital currently attends 215 new cases every year and 70 cases of relapse or second opinion, so a 30% improvement. It will also incorporate the latest advances in the fight against cancer. Once completed, the facilities will occupy a total area of 8,400 square meters in a four-story building located next to the Sant Joan de Déu Hospital and connected to the general hospitalization area and external consultations through a walkway.
DANA-FARBER CANCER INSTITUTE (Boston, USA)
In 1947, Sidney Farber, MD, founded the Children’s Cancer Research Foundation, dedicated to providing compassionate, state-of-the-art treatment to children with cancer while developing the cancer preventatives, treatments, and cures of the future.
The foundation officially expanded its programs to include patients of all ages in 1969, and in 1974 became known as the Sidney Farber Cancer Center in honor of its founder. The long-term support of the Charles A. Dana Foundation was acknowledged by incorporating the Institute under its present name in 1983.
Today, the Institute employs more than 5,000 staff, faculty, and clinicians supporting more than 640,000 annual outpatient visits, more than 1,000 hospital discharges per year, and has over 1,100 open clinical trials. Dana-Farber is internationally renowned for its equal commitment to cutting edge research and provision of excellent patient care. The deep expertise in these two areas uniquely positions Dana-Farber to develop, test, and gain FDA approval for new cancer therapies in its laboratories and clinical settings. Dana-Farber researchers have contributed to the development of 35 of 75 cancer drugs recently approved by the FDA for use in cancer patients.
GEORG-AUGUST-UNIVERSITÄT (Göttingen, Germany)
The University of Göttingen is an internationally renowned research university. Founded in 1737, the University is committed to the values of social responsibility of science, democracy, tolerance and justice. With over 30,000 students and offering up to 212 degree programmes, the University is one of the largest in Germany.
The “University Medical Center of Göttingen (UMG)” of the Georg-August University integrates the Faculty of Medicine and the University Hospital in Patient Care, Teaching and Research under one roof.
With more than 40 clinics and numerous specialized consultations, the UMG is one of the most important centers in the country, especially in the fields of neuroscience research, cardiovascular research and oncology.