Charities: A family donation to save lives

When Canadian businessman James Thoms decided to sell one of his companies, his family’s priority was to fund clinical trials to treat millions of patients charities, including his granddaughter with incurable genetic disease that causes nerve tumors.

The KBF CANADA Foundation received 700,000 Canadian dollars from the family of James Thoms. It collaborates with the Children’s Tumor Foundation (CTF) in New York to fund an ambitious scientific research program.

Photo of James Thoms on the left holding Camille under his shoulder in what appears to be a kitchen.

 

“I am convince that a cure or at least a treatment is on the horizon and I prefer to act now, as long as it can have an effect on Camille’s life. »  Roland Thoms, son of James Thoms and father of Camille

 

 

 

 

 

 

“My father talks about his long years of existence and says he would give his life to help his granddaughter. We have the opportunity to help advance research,” says Roland Thoms, whose 21-year-old daughter Camille was diagnose with neurofibromatosis (NF) when she was seven.

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A student at the University of Utah, Camille suffers from NF2, one of the three types of this disease. “Camille is blind in one eye and deaf in one ear, she has balance problems and does not have full control of her feelings. But she remains a fulfilled young woman who lives her life, ”adds Roland Thoms

A chronic illness

Camille’s family is pinning their hopes on a future drug treatment that would stop the growth of the tumors and thus save the young girl from constantly having to undergo operations, removing the risk of further damage and possible loss of mobility.

“This is an essential aspect for people with this disease”, explains CTF President Annette Bakker, a biochemist from Belgium: “It is a chronic disease whose challenges are unpredictable. A relative once told me that suffering from NF was like walking through a train tunnel in the dark: you don’t know what will happen, but when it does, it hits hard. »

Neurofibromatosis encompasses three distinct disorders: neurofibromatosis type 1 (NF1) affects one in 3,000 people, while neurofibromatosis type 2 (NF2) is diagnosed in one in 30,000 to 40,000 people and NF3 or schwannomatosis, rarer, affects one in 50,000 people.

“People with this disease have in common the loss of tumor suppressor genes,” says Dr. Bakker. Although largely benign, these tumors cause serious health problems. “NF2 results primarily in hearing loss, vision and balance problems. Tinnitus and brain tumors that can be life-threatening when they compress the brainstem,” she adds.

Scientific Research

The Thoms family donation will play an important role in advancing NF2 research. A project that brings together researchers from several world-renowned medical centers.

This research also makes it possible to connect stakeholders and encourage them to contribute in their own way. It brings together the academic world, sometimes confined. And pharmaceutical companies, often reluctant to take risks. While patients are resolutely positioned at the center of research. “At the Children’s Tumor Foundation, patients define the mission of the research project,” emphasizes Dr. Bakker.

“The results of this 18-month research program will also be published in open access,” said Benoît Fontaine , CEO of the KBF CANADA Foundation.

Community

Recognition of the growing role CTF is playing in the search for a cure further inspires the team in its equally important commitment to supporting families. “We are not just a research machine, we bring people together and we create communities. Our mission is to provide a safe haven for patients and to empower them to truly participate,” says Dr. Bakker.

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She also highlights how important it is to provide accurate information that doesn’t just paint a picture of hope.

For Roland Thoms, the realistic expectations of his family and his confidence. In a future drug treatment for NF2 are a source of motivation. “We haven’t seen any tangible benefits yet, but it’s better to do something than to sit idly by and helpless. I am convince that a cure or at least a treatment is on the horizon. And I prefer to act now, as long as it can have an effect on Camille’s life. »

She also highlights how important it is to provide accurate information that doesn’t just paint a picture of hope.

For Roland Thoms, the realistic expectations of his family and his confidence. In a future drug treatment for NF2 are a source of motivation. “We haven’t seen any tangible benefits yet, but it’s better to do something than to sit idly by and helpless. I am convince that a cure or at least a treatment is on the horizon. And I prefer to act now, as long as it can have an effect on Camille’s life. »

She also highlights how important it is to provide accurate information that doesn’t just paint a picture of hope.

For Roland Thoms, the realistic expectations of his family and his confidence. In a future drug treatment for NF2 are a source of motivation. “We haven’t seen any tangible benefits yet, but it’s better to do something than to sit idly by and helpless. I am convince that a cure or at least a treatment is on the horizon. And I prefer to act now, as long as it can have an effect on Camille’s life. »

She also highlights how important it is to provide accurate information that doesn’t just paint a picture of hope.

For Roland Thoms, the realistic expectations of his family and his confidence. In a future drug treatment for NF2 are a source of motivation. “We haven’t seen any tangible benefits yet, but it’s better to do something than to sit idly by and helpless. I am convince that a cure or at least a treatment is on the horizon. And I prefer to act now, as long as it can have an effect on Camille’s life. »

She also highlights how important it is to provide accurate information that doesn’t just paint a picture of hope.

For Roland Thoms, the realistic expectations of his family and his confidence. In a future drug treatment for NF2 are a source of motivation. “We haven’t seen any tangible benefits yet, but it’s better to do something than to sit idly by and helpless. I am convince that a cure or at least a treatment is on the horizon. And I prefer to act now, as long as it can have an effect on Camille’s life. »