Brian Shaw has lived 61 inspiring and accomplished years; all while being affected by Neurofibromatosis Type 1. Like all people who are affected by NF, it has been an interesting journey. At just 18 months old back in 1959, Brian has his first operation on a tumour near his left eye.
The precision during surgery was not as accurate as it now, and every year Brian was in hospital at least once, if not twice a year until he was about 13 – 14 years old. Brian’s eye surgeon was great and did the best he could with the information and skill he had acquired, often taking photos and contacting doctors in the USA and Europe for their opinions and suggestions as to how to proceed.
By the time Brian was 20 years old, he had suffered through almost 30 operations on his eye, but never let it get in the way of his teaching.
Brian’s experience at school wasn’t the best, although he was not affected academically and went on to receive a BA(Science) Diploma in Education and Graduate Diploma of Education (Computer Studies). Brian has been teaching ever since.
Brian went on to get married and had three children, one of whom also has NF and has a young boy who is not affected. Brian is currently a Computing/Digital Technologies teacher in Canberra, where he is very much respected amongst his students.
Since the early 1980’s, Brian has tried to actively promote awareness of all types of NF in both the community and the schools where he has taught. Before The Children’s Tumour Foundation, the organisation was volunteer based and referred to as NFAA. Brian was involved in the evolvement of the organisation as he was asked to update and manage their website for a while, redesigning and making sure the material was updated when required.
At the schools Brian has been employed at he has, and continues to, give guest talks to the senior biology students about Neurofibromatosis on a regular basis. While Brian taught as Kinross Wolaroi School in Orange, he was able to raise over $3, 000 for the NF Camps, enabling families to attend.
I really believe the CTF is a really top organisation and the work they do and the funds that they provide are essential in trying to find if not a cure, a reason behind the symptoms and they ways in which they can be best handled and families supported."
Currently, Brian experiences severe nerve pain at times that can be frustrating due to no real treatment other than some pills to help. He acknowledges the essential support that his family gave him while growing up, as well as his wife Sandra, children, and extended family. Even his students have shown their support by getting involved in CTF fundraising initiatives on behalf of Brian.
In the last few years, Brian has tried to be an active participant in all the fundraisers that have occurred, especially in the ACT. where he has raised an incredible $10,000 during this time. Brian is in awe of people like Cameron Elliott and family, acknowledging their amazing efforts in their fight to conquer NF.
In a few years, when Brian retires, he hopes to increase his already impressive involvement in providing talks to schools and creating further awareness of all types of NF.