Welcome to the NF Stories page where weekly videos and personal articles highlight the journeys of patients and families living with neurofibromatosis

Each featured story is unique. However, they all share the common thread of individuals living their best life despite the NF diagnosis.

We hope these stories inspire you and remind you that you are not alone on the NF journey.

If you have questions about NF or want to talk to a health coach please call 800-385-2263 or complete the form here. (https://www.tumourfoundation.ca/nf-support-line/)

If you’d like to share your story please get in touch with our staff and we will set up your interview. (brandy@tumourfoundation.ca)

We are glad you are here!

Click any image to enlarge the set

Meet Angie

The first thing you will notice about Angie is her amazing smile and colourful hair. Although Angie experienced a stroke from epilepsy and lives with multiple cutaneous neurofibromas, she has always kept a positive outlook. She says, “I don’t ever let NF get me down. I like to remember that there are always so many people worse than me.” Having perspective, the support of her husband and close friends, and living a life in gratitude has helped Angie overcome the challenges of NF. Tune in to hear more of her story.

Meet Mike

Mike is a dedicated dad to his two boys, Jaxon and Emerson, both who live with a NF1 diagnosis. When their local Children's Hospital wasn't able to meet Jaxon's unique medical needs, Mike fought to find care for his son. Listen in as he shares his families' health care journey which took them beyond the Canadian border.

Meet Jill

Jill is the President of the Tumour Foundation of BC, and a mom of a child with neurofibromatosis. Just like other parents Jill experiences fears and worries over raising a child with NF. Jill, however, has the perfect antidote for her fear - ACTION!

Becoming involved with the charity has helped Jill cope with the unique challenges of NF and simultaneously helped the Foundation to expanded awareness. Watch Jill’s passion come alive as she talks about filling the gaps in medical care that patients with NF currently experience in British Columbia.



Meet Winnie

Winnie was the recipient of the Tumour Foundation of BC's 2019 Education Award. Becoming a paediatric nurse has been Winnie's dream and she has not let NF deter her from that goal. Winnie believes that being a nurse is not only about saving lives and curing illness, but healing souls. Winnie wants to be the light in others lives just as so many healthcare professionals have been in hers. She hopes to inspire others to become the best version of themselves, and to feel empowered to empower others!



Meet Courtney

In this latest episode of NF Stories, Courtney shares how she navigated the pandemic as a nurse working on the front lines during COVID, and more recently, how she dealt with the discovery of a new tumour in her pelvis-shortly after her wedding. Tune in to learn how she persevered and stayed positive during this unprecedented year.

Check out Courtney’s blog at:http://courtneys-column.blogspot.com.


Meet Tara

Tara is an amazing woman who has been through a lot on her NF journey with the newest excitement of having a baby girl. Tara and her husband decided to go with surrogacy in lieu of Tara carrying their child.

Click on the link below to hear Tara share about navigating genetic testing, IVF, surrogacy and motherhood as a person with neurofibromatosis. Tara has an wonderful amount of experience and knowledge that she loves to share. If you have any questions she has graciously said you can feel free to reach out to her via the Foundation.

Meet Sheena

Sheena is a mom to two girls- including a teenage daughter who has NF1. Listen in as Sheena shares how her family has learned to live life one day at a time when facing the challenges of neurofibromatosis. Her strategies will help you keep you a positive mental attitude through your toughest days.

Meet Tim and Gail

This story is one you will want hear if you believe in love. Gail and Tim found each other in the most unexpected way. After meeting and learning that they had more than just NF in common these 2 souls became inseparable and are each others biggest cheerleaders.

Hear their story and be ready to have your heart opened wide with their zest for life and each other despite the many challenges they have faced living with neurofibromatosis.

Meet Tammy

Tammy and her three children all share the diagnosis of NF. She has found joy in the hard times through her art and animals. The one thing she would like to share with you is to always stay strong.

Meet Tammy

Tammy and her three children all share the diagnosis of NF. She has found joy in the hard times through her art and animals. The one thing she would like to share with you is to always stay strong.

Meet Brandy

This NF story is a special feature as we interview Brandy Meisner, the Foundation's Community Engagement Coordinator and mom living with NF. In this first episode of NF Stories Lives Brandy shares practises on how to care for yourself despite the many challenges that arise with raising a child with NF. She is interviewed by the Foundation's Executive Director, Desiree Sher.