Tumour Foundation of BC

Tumour Foundation of BC Charitable organization dedicated to optimizing the health and well-being of all British Columbians affected by NF There is no cure. www.tumourfoundation.ca
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The Tumour Foundation of BC has been serving families affected by NF since 1984. Neurofibromatosis (NF), pronounced neuro-fibroma-tosis, is a genetic disorder of the nervous system that causes tumours to form on the nerves anywhere in or on the body at any time. NF is the most common genetic neurological disorder caused by a single gene. NF tumours can lead to deafness, bone deformities, learning

disabilities, disabling pain, and cancer. NF is more common than cystic fibrosis, Duchenne's muscular dystrophy and Huntington’s disease combined and effects over 2.5 million people worldwide. Through our support, education and research programs we strive to improve the lives the patients and families living with this genetic disorder. We are now on a mission to raise funds to establish the first medical care clinic for those affected with this tumour disorder. Please stop by our website and join our email community to learn more.

Did you know we have an online resource guide?This is a curated hub of trusted tools, guides and support for individuals...
08/19/2026

Did you know we have an online resource guide?

This is a curated hub of trusted tools, guides and support for individuals and families living with NF. You'll find downloadable guides, educational tools, curated links and resources and support for families, educators and professionals.

In BC, many families face NF without a coordinated care clinic. Access to clear, reliable information matters.

Explore the Resource Centre today by visiting our website! www.tumourfoundation.ca

Whether you're living with NF, supporting a loved one, volunteering, fundraising or spreading awareness - you are part o...
08/17/2026

Whether you're living with NF, supporting a loved one, volunteering, fundraising or spreading awareness - you are part of something important. Every action helps build a stronger community for people in BC living with NF. Together we can make sure that no one faces this journey alone. Thank you for being a part of ours.

Are you ready to make a difference? The Tumour Foundation of BC is always seeking passionate individuals to join our Boa...
08/15/2026

Are you ready to make a difference? The Tumour Foundation of BC is always seeking passionate individuals to join our Board of Directors.

We're looking for people who bring:
- diverse perspectives
- a collaborative spirit
- a desire to make a meaningful impact

Prior board experience not required. All you need is a commitment to supporting individuals and families impacted by NF. We especially welcome anyone who has lived experience with NF or connections to the community.

If this sounds like you or someone you know, please connect with us.

Email us: [email protected]

We want to hear from you! If you would like to organize an event in your community, or know a business, foundation or co...
08/14/2026

We want to hear from you!

If you would like to organize an event in your community, or know a business, foundation or corporate sponsor that may be interested in supporting the work of the Tumour Foundation, let us know!

Every action, every introduction, every hour volunteered, every fundraising idea and every act of advocacy has the potential to make a meaningful difference in the lives of people impacted by NF. Together we can make sure that no one walks this journey alone.

Email us: [email protected]

If you've ever considered volunteering with us now is the time to step forward. If you have skills in marketing, communi...
08/14/2026

If you've ever considered volunteering with us now is the time to step forward. If you have skills in marketing, communications, grant writing, finance, event planning or just want to help we would love to hear from you.

Every introduction, every hour volunteered, every fundraising idea, and every act of advocacy has the potential to make a meaningful difference. Help us make sure no one affected by NF has to walk alone.

Email: [email protected]

Like many charities, the Tumour Foundation of BC has faced an extraordinary series of financial challenges over the past...
08/13/2026

Like many charities, the Tumour Foundation of BC has faced an extraordinary series of financial challenges over the past two years. Despite careful planning and difficult decisions, the financial realities ultimately led us to make the heartbreaking decision to eliminate our Executive Director position.

As of today, the Foundation is operating entirely through its volunteer Board of Directors.

For more than 40 years, the TFBC has grown into a province-wide source of support, education, advocacy, and connection for individuals and families affected by NF. We don't want to lose what we've built together-but we can't preserve it alone.

We need our community now more than ever.

If you've ever considered joining our Board of Directors or volunteering your time, now is the time to step forward.

Our volunteer Board members remain deeply committed to ensuring that individuals and families affected by NF continue to have access to support, education, and connection. Like many of you, our Directors are balancing careers, families, and personal commitments while giving their time because they believe this community matters.

The future of the Tumour Foundation of BC will depend not only on its Board, but on all of us.

As we are transitioning back to being a 100% volunteer-run organization, we are adjusting how we manage our day-to-day operations but our commitment to individuals and families affected by NF remains unchanged. We will continue working to provide support, education, connection, and advocacy for the NF community.

Reach out anytime. We’re here for you.

During this transition, response times may be longer than usual. If you would like to connect with us, please email [email protected]. Please note that our phone line is not currently being monitored.

We deeply appreciate your patience and understanding as our volunteer team takes on these new roles and responsibilities. Thank you for continuing to stand with us and support our work to improve the lives of those affected by NF.

Visit our new Resource Centre for trusted information, practical guides, and educational resources for individuals and f...
07/31/2026

Visit our new Resource Centre for trusted information, practical guides, and educational resources for individuals and families living with NF. We're always adding new information to help you stay informed and connected.

Explore the Resource Centre:
https://tumourfoundation.ca/resource-centre/

Is there a topic you'd like us to cover? Let us know in the comments or send us a message. We're always looking for ways to better support the NF community.

Important Update for Adults Living with NF1 Canada's Drug Agency has issued a draft recommendation not to publicly reimb...
07/16/2026

Important Update for Adults Living with NF1

Canada's Drug Agency has issued a draft recommendation not to publicly reimburse selumetinib (Koselugo) for adults with NF1 who have symptomatic, inoperable plexiform neurofibromas. The recommendation for eligible children remains unchanged. You can find the draft recommendation on the CDA website. https://bit.ly/4wRW1sm

This is not the final decision.

The Tumour Foundation of BC has until July 30 to respond and your voice can make a difference.

If you are an adult living with NF1, or care for someone who is, we want to hear:
How NF1 affects your daily life
What access to treatment would mean for you
How this recommendation could impact you or your family

If writing your story feels overwhelming, we'll help.

Reach out to us and we'll work with you to ensure your experience is included in our submission.

Our organization remains committed to advocating for equitable access to treatments and ensuring the voices of people living with NF1 continue to be heard throughout this process.

Send us a message if you'd like to share your story.

For many years, families affected by NF have dreamed of better care, stronger research, and greater collaboration across...
07/15/2026

For many years, families affected by NF have dreamed of better care, stronger research, and greater collaboration across Canada. Today, we're beginning to see that future take shape.

Physicians and researchers from across the country are working together to strengthen NF care, and here in British Columbia we're encouraged by growing conversations about a dedicated NF clinic.

Progress like this doesn't happen overnight. It happens because families, healthcare professionals, volunteers, researchers, donors, and advocates continue to believe that better is possible. Thank you for being part of this journey.

The Charity Challenge is just around the corner-and there’s still time to be part of something meaningful.✔️ Set up your...
06/24/2026

The Charity Challenge is just around the corner-and there’s still time to be part of something meaningful.

✔️ Set up your fundraising page�✔️ Invite your team�✔️ Take that first step

Let’s come together and make sure no one with NF feels alone.

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Vancouver, BC
V6K4R8

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