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
_2_800_600_s_c1.jpg)
NF & Sport: Joy’s Journey
Find out more about the impact of sport on Joy's NF1 journey & how running changed her life forever.
Read More_5_800_600_s_c1.jpg)
Safiya’s NF1 Journey
Find out more about Safiya & how her NF1 diagnosis has made her 'determined to make a difference'.
Read More_1_800_600_s_c1.png)
The Boy Who Played Cricket
Take a look behind the scenes of team NTUK's visit to the 'The Boy Who Played Cricket' opening.
Read More_800_600_s_c1.jpg)
Ella’s Story
Ella shares her insights into campus life with NF; her victories & hurdles & the importance of self- belief.
Read More_800_600_s_c1.png)
Amit Ghose: The Unscripted Podcast
Caught the brand new pod by NTUK Ambassador Amit Ghose? Everything you need to know about The Unscripted Podcast inside.
Read More
Oliver’s Blog
Oliver Bromley shares some personal experiences of visible difference, and how education and kindness can reduce stigma.
Read More_2_800_600_s_c1.jpg)
3BM & Fusion’s Purple Forum nominate Nerve Tumours UK as their Charity of the Year
Take a look inside Purple Forum and how they're raising awareness and funds for the NF community.
Read More_2_800_600_s_c1.jpg)
George, Alisya’s & Leo’s NF1 Story
Find out how George and his team at Rolls Royce are raising NF awareness because of NF hero Leo.
Read More