GLIOMATOSIS CEREBRI GLOBAL

An International Brain Tumor Community / Families United Worldwide for a Cure

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

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.

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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)

STORIES

Have you or someone you love been touched by Gliomatosis Cerebri? Help us give hope to people across the country and around the world by sharing your story. It’s stories like yours that provide comfort and courage to others whose lives have been touched by this rare brain cancer.

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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.

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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.

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COMING EVENTS

Family Council Meeting 2019

Gliomasotiscerebri.org is supporting CBTP's project on Family Council Meeting 2019. The event is for pediatric brain tumor families who are passionate about funding research. This is an important day for the research teams of Weill Cornell Medicine to inform concerned families about progress in the lab.
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NEWS & RESEARCH UPDATES

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...

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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...

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Gliomatosis Cerebri

Gliomatosis cerebri is diagnosed based on imaging, instead of pathology like most other tumor types. It occurs most often in people between the ages of 46 and 53 but can occur at any age. Gliomatosis cerebri occurs slightly more often in males than females. It usually appears abnormal in three or more lobes of the brain. To understand it better clinicians grouped it into three grades based on their characteristics.
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