OUR STORY
Different stories bringing people touched by Gliomatosis Cerebri together.
The story that resulted in the creation of GC Global started during the first GC Conference held at the Marie Curie Cancer Institute in Paris, France in March 2015. This conference was the force that united these families, family foundations, medical experts, and scientists into one purpose. The purpose of seeking the right cure for patients suffering from Gliomatosis Cerebri. Since that day, GC Global members and partners have been moving forward on research, fundraising, and creating a community, so that families around the globe touched by this rare disease can receive the help they need.
OUR MISSION
GC Global is an international community of researchers, family foundations, and families touched by GC. It works to connect these families, to provide them with resources on GC, to share information on ongoing research and to support research to identify effective treatments and one day a cure for Gliomatosis Cerebri.
OUR OBJECTIVES
- Create an international platform for Gliomatosis Cerebri and share resources and information.
- Collaborate with physicians and researchers to support international Gliomatosis Cerebri conferences to raise awareness and advance research.
- Support research to identify effective treatment options and find a cure for Gliomatosis Cerebri.
- Create opportunities for families touched by Gliomatosis Cerebri to connect, share information given and receive support.
OUR COMMUNITY
When many of us started this journey, we were alone. never having heard of Gliomatosis Cerebri, many of us turned to the internet and social media to find information about where researches are being done, the progress of these researches, and to meet others on the same path.
What we found was that information was very limited: there was no research being conducted and no community of Gliomatosis Cerebri families existed. This has now changed, for, in addition to this website, there is a Facebook Group, “The GC Connection” and an internationally connected community. We also have a Facebook resource Page “GC Global – Gliomatosis Cerebri” created for the purpose of spreading awareness.
We have found our supportive community, and have become one far-reaching extended family. No one understands what you are going through quite as much as someone else who has been there or is going through it themselves. We have different ways of reaching out, of sharing what we have been through. Hopefully, you will find a way that’s right for you, whether that is a support group or by sharing stories online.
Share your story by sending to: thejoshuabemboproject@gmail.com
Registry
ENROLL IN THE REGISTRY
The GC Registry aggregates data and tissue samples from patients around the world. Intensive study of these samples and data will help unlock the mysteries of this terrible tumor.
Partner
Share4Rare is a European project which aims to improve the quality of life of those affected by a rare disease. Their vision is to improve patients’ lives by promoting better science. Currently, they partner with several research institutions in the UK and now with the Gliomatosis Cerebri Conference to advance research and share knowledge.
AYJ Fund / Boston, MA, USA
Elizabeth’s Hope / New York, NY, USA
Elizabeth’s Hope
New York City, NY
Email: info@elizabethshope.com
The Joshua Bembo Project / Maryland, USA
The Joshua Bembo Project
Waldorf, MD
Email: thejoshuabemboproject@gmail.com
Rudy Menon Foundation / London, UK
Rudy Menon Foundation
London, UK
email: rememberingrudymenon@gmail.com
Izas La PrincesaGuisante / Barcelona, Spain
Franck Un Rayon de Soleil / France
Franck Un Rayon de Soleil
8 Rue des Orfèvres
67290 Wingen-sur-Moder, France
email: a.andlauer@alphavalue.ue
Rudy Menon Foundation / Kuwait
Rudy Menon Foundation
India
email: rememberingrudymenon@gmail.com
The Joshua Bembo Project / Philippines
The Joshua Bembo Project
Philippines
Email: thejoshuabemboproject@gmail.com
Mathys Un Rayon De Soleil / France
Mathys Un Rayon De Soleil
113 La Pécotaie
44390 Saffré, France
Anne Un Rayon De Soleil / France
Rudy Menon Foundation / India
Fe Y Misericordia / Peru
Franck Un Rayon de Soleil / France
Weill Cornell Brain & Spine Center / New York City, NY
Dr. Jeffrey Greenfield
Weill Cornell Brain & Spine Center
1300 York Avenue, New York, NY 10065
Phone: (212) 746-2363
Dana–Farber Cancer Institute / Boston, MA
Institute of Cancer Research / London, United Kingdom
Hospital Sant Joan de Déu Barcelona / Barcelona, Spain
National Children’s Medical Center / Washington DC
Dr. Roger Packer
National Childrens Medical Center
111 Michigan Avenue NW, Washington, D.C., 20010
Phone: 1-888-884-BEAR (2327)
CONNECT WITH FAMILIES
Connect with families throughout the world. We have found that other families can provide the best resources as you navigate this difficult time. We can connet you with another family who's been where you are now. Reach out, share your story, and learn from each other. We are stonger together.
COMMUNITY
Join the advocacy and become part of the community that was established to support groundbreaking research in finding a cure for Gliomatosis Cerebri. Partners are either family touched by Gliomatosis Cerebri or foundations supporting the same cause. Click below to learn how to join the community.
COMING EVENTS
3rd GC Conference 2019
Family Council Meeting 2019
NEWS & RESEARCH UPDATES
Izas’ Foundation: A Mother’s Courage Against a Strange and Invasive Childhood Cancer
Izas' Foundation: A Mother's Courage Against a Strange and Invasive Childhood Cancer Congratulations to the Izas' Foundation, the host foundation for the successful 3rd Gliomatosis Cerebri Conference held in Barcelona, Paris. The success of the event created more...
HOSPITALS & RESEARCH CENTERS – USA
HOSPITALS & RESEARCH CENTERS HOSPITALS & RESEARCH CENTERS – USA Seeking for help from the right people with the appropriate facilities is one of the most important thing to decide on for families who were touched by Gliomatosis Cerebri. Thanks to NCHI...
Reference Physicians
HOSPITALS & RESEARCH CENTERS One of the pains of families who were touched by Gliomatosis Cerebri is not knowing the right people to contact for consultations. With that in mind, we referenced below 27 physicians representing each of the different countries in...