What is Neurofibromatosis
Learning difficulties can affect as many as 80% of children with Neurofibromatosis Type 1 (Nf1). But the condition doesn’t affect all children the same way – each child experiences their own set of difficulties ranging from very mild to severe.
Difficulties can be further compounded when a parent has a learning difficulty due to Nf1. These parents will find it difficult to explain to teachers why their child is displaying “bad behaviours” and not keeping up with their peers.
Tumour Support Scotland can help support parents facing this problem.
What We do at Tumour Support Scotland
We provide a range of help sheets for parents, teachers and support staff, to aid understanding of Nf1 children and ways to help them to achieve their full potential. All our help sheets are available for download on the Factsheets Page.
We can also provide power point presentations that help a child’s peer group to understand why their classmate needs extra help, and why they behave in a certain way. Once children realise there is a reason for particular behaviours they, hopefully, become more accepting.
Events & Workshops
Tumour Support Scotland organises family events throughout the year, where families can get together and connect with others in the same situation.
Just being able to chat with others who understand can help the whole family deal with their situation. Many friendships have been formed at Tumour Support Scotland events, especially at the year’s main event – our Annual Family Workshop Weekend, held in Stirling in April.
May is Nf Awareness Month and while we try to spread awareness every day of every month, we work doubly hard in May to find ways to raise awareness. Keep an eye on the website to find out about our activities.
Our mascot Cal has his own club – Cal’s Pals. Cal is an active participant in Tumour Support Scotland: he visits schools and helps to explain all about Neurofibromatisos. Cal joins us for Tumour Support Scotland events and, overall, he’s a bright presence for everyone inside (and out) of the charity.
Kids can join the Cal’s Pals club to receive their own Cal’s Pal tee shirt and goodie bag. Simply email firstname.lastname@example.org.
Meet the board of trustees
Chair and founder
Karen is the mother of two grown up sons, the eldest has Neurofibromatosis. Watching her son go through school, college and life in general inspired her to get involved. She has now spent over twenty years in the Nf world trying to make a difference.
Her hopes for the future are that every child with Nf can reach their full potential, both educationally and socially, and to be able to access the healthcare necessary to live a life that’s as pain free as possible.
Janice comes from a three-generation family with Neurofibromatosis. She has the condition herself as do her two daughters.
Janice’s oldest daughter works for Starbucks as she saves to go traveling abroad, where she hopes to do some voluntary work. Her younger daughter (currently 17) hopes to pursue a career in childcare – supporting children with additional needs. By day, Janice works for a bakery as an accounts clerk.
Fundraising Manager and Child Protection Officer
Diagnosed with Neurofibromatosis at the age of 10, Andy is a passionate advocate for the charity and in raising awareness of Neurofibromatosis.
By day, Andy has spent nearly two decades in sales and management, primarily in retail, holding several positions with an array of companies. Andy lives in North Ayrshire with his fiancee and two sons.
One of Gary’s three sons has Neurofibromatosis. The support his family received from Tumour Support Scotland prompted Gary to get involved with the running of the charity and ensuring that families – past, present and future – who encounter Neurofibromatosis can access the same help and support.
Fundraising Officer and Secretary
Gill has two teenage children, her eldest was diagnosed with Neurofibromatosis at the age of 9. The family felt very lucky that they were introduced to Tumour Support Scotland soon after diagnosis because NF1 was new to them. The support received from the charity was invaluable.
Gill wanted to give back so volunteering for the charity seemed the natural thing to do.