12/02/2025
Fifteen years ago, I lost my father to Neurofibromatosis Type 2 (NF2). NF2 is a rare genetic disorder that affects about 1 in 30,000 people. It’s caused by a missing protein that normally helps prevent tumours from forming. Without it, tumours can grow on the auditory and balance nerves near the brain stem, as well as along the spine and behind the eyes. These tumours can lead to hearing loss, vision problems, chronic pain, swallowing difficulties, and serious mobility challenges. Awareness is low, but its impact on families is profound.
My father lived with NF2 with strength and grace. Throughout his life he had a number of surgeries to attempt to reduce the size/ remove tumors from his brain. In 1995, following extensive brain surgery, he lost the ability to hear, speak and eat. While this might have stop most people from enjoying life, it did not stop him. He continued to be a climate change advocate, a volunteer for Habitat for Humanity, and an active member in the NF2 community. He would do anything for his children to give them the life experiences that brought them joy. He taught me about patience, determination, and the power of optimism and gratitude.
My dad taught me many lessons, but the greatest was this:
“It’s not what you don’t have, it’s what you do have that matters.”
By giving today, you are supporting research that could change the future for families living with NF2. Your contribution, no matter the size, helps move us closer to better treatments and, one day, a cure.
Please use this link to donate : https://join.ctf.org/fundraiser/6840477
If you are unable to donate, please consider sharing with your community to help spread awareness about NF2.
Thank you for honouring my father’s memory with your support and for helping families who are still fighting this disease.
Your generosity truly makes a difference.
