Team Funny Lumps
Gill Penfold is raising money for Tumour Support Scotland
Participants: Too many to list individually
Story
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Neurofibromatosis Type 1 (NF1) is a progressive genetic condition that affects the nervous system, skin, eyes, skeleton, endocrine and circulatory system. Tumours can develop anywhere on the nerves throughout the body both internal and external. Further complications can include scoliosis, pseudoarthrosis and kidney problems. NF1 is one of the most common but least known genetic conditions, affecting 1 in 3000 births. With this in mind, when our son Ellis was diagnosed with the condition in 2016 we had never heard of it or met anyone with it. Thankfully we were
introduced to Funny Lumps by chance not long after his diagnosis in 2016. We received a lot of support and information which helped Tony and I understand what NF1 was and how it could potentially effect Ellis. The difficult part to get our heads around was the fact that NF1 effects everyone
differently so you can't look at others and know how things will pan out. its the uncertainty and progressive nature of NF1 that makes it so much more difficult to deal with at times.
Fast forward to 2017 when Funny Lumps asked me to run the Edinburgh Marathon for them to help raise money and awareness of NF1. Although I hate running, they managed to tug at my heart strings and I agreed! Straight away I got to work and rounded up the troupes to create Team Funny Lumps to run in the weekend festival. Initially we had 17 members running in various races over the weekend which we grew to a massive 70 members in 2019.
It was through this event that we were introduced to another NF1 warrior called James who happened to just live along the road from us. the power of raising awareness is just awesome and why it is so important. James had never met anyone else with NF1 before so it was lovely for Ellis and James to meet up. The rest of the Duff family came along to some of the Funny Lumps events and the rest is history.
Ellis and James' NF1 effects them differently, however a lot of what they both face daily is very similar. Because you can't always see NF1, its easy to think theres nothing going on.....this couldn't be further from the truth. Both boys have regular MRI scans to monitor tumour growth and attend multiple hospital appointments, all of this causes a lot of anxiety. Im sure I can speak for both boys when I say how well they do trying their best to get on with what their NF throws at them. Having NF1 also means you have a higher chance of having a diagnosis of ADHD and/or ASD. Both boys are affected by these disabilities which also has a significant impact of their daily life, from taking 3 types of medication to struggling with friendships and social situations that most of us take for granted. Ellis and James are a real inspiration to Team Funny Lumps and this is why we do what we do.
Team Funny Lumps has become more than just a group of people running to raise money and awareness, it’s a community made up of family and friends, young, old, new and seasoned runners. From everyone that’s part of Team Funny Lumps thank you for your donation today.