The Foundation
CHU Sainte-Justine
over 6 days
from St-Joseph-du-lac towards Quebec...
from St-Joseph-du-lac towards Quebec...
Benjamin's story
It is to salute Benjamin’s determination and perseverance throughout his illness and his desire to live a normal life despite this one that the Benjamin Lepage Foundation has been created in his memory.
When it all started
In June 2018, Benjamin underwent emergency surgery after a tumor was discovered on one of his adrenal glands. According to his surgeons’ description, the mass was gigantic. After studying it for a while, it was confirmed that the tumor was indeed malignant. It was an extra-skeletal myxoid chondrosarcoma, a rare source of cancerous tumor and practically non-existent in children.
The operation consisted of removing the mass and then following up with treatment. Benjamin was hopeful that he would see an eminent recovery. Unfortunately, in the months that followed there was a recurrence. Since the treatment of this type of cancer has not evolved much in recent years, he had to resign himself to another option, that of tumor sequencing. A practice suggested by Benjamin’s staff that increased his level of hope by giving him valuable time with his family.
The targeted therapy that Benjamin received allowed him to live a fairly normal life, the one he so desired to live. Throughout the process, Benjamin never wanted to be seen as vulnerable and sick. He stood strong and proud as he fought against this disease that had decided to take his most precious possession, his life.
After two long and perilous years, Benjamin closed his eyes and never opened them again, leaving us with a great lesson of courage and tenacity to share.
The Foundation
The Benjamin Lepage Foundation was created in 2021 by members of Benjamin’s immediate family. The experience they had throughout the course of the disease was the basis for the creation of this foundation. During the multiple visits to the hospital, several situations brought to light shortcomings to which they had no help or answer. The role of this foundation is also to offer a general structure to better manage the real needs. Our belief is to get the sick child to consider several options in order to receive the best treatment he/she is entitled to even if it is a rare cancer.
The primary goal of the organization is to provide financial assistance to families by ensuring the well-being of individuals with rare cancer strains or any form of illness that requires expensive, experimental medication and/or care. Most medications are not covered or substantially covered by standard financial aid (personal or government insurance). Our goal is to alleviate the unbearable weight on the shoulders of family members who must primarily focus their energy on their sick child.
The vision
That all children with cancer have access to available treatments or medications, in the hope of a complete cure or well-being.
The mission
The
foundation aims to provide funds to families in need to properly treat patients requiring special treatments, but more importantly to achieve a cure.
The Foundation aims to foster and promote medical research to identify the source of certain rare cancers through targeted therapies.
Our GOAL
The future in research is based on the complete sequencing of the human genome DNA to better determine the characteristics of each tumor, to have a clear diagnosis, to identify the irregularities involved and to treat them with targeted therapies.
This type of research helps in the discovery of biological markers. These markers provide clues to identify the most effective treatment to prescribe. The idea is to target the irregularities in order to correct them so that everything returns to a certain normality. To stop the evolution of the disease in order to improve the quality of life of the young patient, or even to cure without sequels or complications by limiting the side effects.
Our Collaborations
We collaborate with the CHU Sainte-Justine, more specifically with the Hematology-Oncology Department and the Molecular Tumor Committee. It is through the attending physician and the pivot nurse that families requesting financial assistance will be assigned to a personalized assistance program.
A treatment proposal will first be presented to the family based on the protocol and type of medication required. Depending on the support of their insurer (partial or non-existent), the foundation will support the families financially in whole or in part for the costs that the applicant cannot assume alone.
To help us raise the necessary funds to help families, we will organize fundraising activities such as a cycling tour, fundraising dinners and silent auctions. Follow us for dates and locations.
Board of Directors
Patrice Lepage
President/Chairman
Cynthia Simoneau
Vice-Chairwoman finance
Nathalie Lepage
Vice-chairwoman, communications
Official start: August 13, 2021 for more than 800km
Our Ambassadors
** COVID-19 MEASURES ** Due to current sanitary measures in place, the first edition of the tour will be limited to our ambassadors and it’s close family/relatives.
Miriane Bouchard
Dominique Daoust
Francois Dubé
Jonathan Béchard
Virginie Matton
