Stewart Lee Member of the Board of Trustees who has NF2 on Lockdown Life
22 May 2020
I'm Stewart 34 and I am a Member of the Board of Trustees. I have NF2, which I inherited from my dad.
Working in Digital Communications for the past decade in the charity sector and as a Trustee, it has been a joy to see Nerve Tumours digital presence evolve from literally nothing to grow and support so many people. The integration of the community has been great and any voluntary work or fundraising by the community is more than welcome. The team we have in place now launches so many useful campaigns and initiatives to raise awareness about Neurofibromatosis and my social media news feeds are always full of photos of our amazing supporters.
It is important to celebrate World NF 2 day, because we live and endure our lives with such a challenging condition, it's nice to have a day to celebrate how amazing we all are!
Like everyone else it was a shock and such a massive change. Like many others my operation has been postponed (Cochlear Implant) and I was separated from loved ones. My family has adapted well, however zoom calls, homework and social lifes in one small house definitely is a challenge though! I have up and down days, like everyone else, being near to my local parks, captioned zoom meetings and quizzes have really helped! Having the condition is isolating and physically challenging in so many ways, so the extra pressure of the lockdown compounded on that. I feel in a much better place than I did at the start at the lockdown, being able to email my NF nurse for support and to discuss rearranging appointments helped immensely.
Likewise the good weather has helped me chill out when I've needed to!
Small charities like Nerve Tumours UK rely on your unwavering support at critical times like these, our specialist nurses are a credit to the country and without them i dread to think what would happen to families that live with the conditions.
Having steered the charity through the recession in 2008-2011 I know only too well the challenges that charities up and down the country face this year and beyond. I also know of the determination, kindness and resolve that our supporters have to make a difference and that can outshine any challenge that our charity faces, every step walked, penny donated, minute volunteered will make a vital difference to a charity's fortunes.
I like to think having a complex genetic condition has forearmed me with emotional resilience to get through something like this, likewise getting #MentalHealth support and therapy has also been fantastic for dealing with such large lifestyle changes #MentalHealthAwarenessWeek
Filter News
Meet Pearl
Pearl Kelly is 22, and has multiple complex problems caused by her NF1. Here she explains her outlook on life
Read MoreMeet Joanna
Joanna is a lecturer in Mitochondrial Genetics at Newcastle University, she recently ran the London Marathon. Meet her here
Read MoreNew Research Into Appearance Altering Conditions
Maia Thornton PhD is looking for both parents and professionals who care for someone with an appearence altering condition
Read MoreAdam’s Story
Adam has NF1 yet is still one of the most active and athletic people in the UK. Read about his fascinating story here:
Read MoreLittlewood’s Charity Night
Have a read of yet another successful charity night hosted by the Littlewoods
Read MoreEmily Owen Positive Role Model (Disability) Award Nomination
Vote for our tustee Emily Owen at this year's National Diversity Awards 2019.
Read MoreResearch Outlook with Prof Gareth Evans
Have a read on some of the latest research with Prof Gareth Evans
Read MoreICAEW Worcestershire Annual Dinner and Ball Fundraiser for NTUK
The ICAEW Worcestershire Annual Dinner and Ball raised an incredible amount for us this year! Find out more here:
Read MoreWe are Family London Marathon
Have a read of the remarkable journey the White family has undergone in support of their young daughter Gaby who has NF.
Read More