Iím Nicola McBride, Alopecia UKís Research Lead. I initially worked for AAR-UK as Fundraising and Research Coordinator from September 2016 - October 2017. When both AAR-UK and AUK merged on 1st November 2017 I moved into the role of Research Lead.
How did I get involved with AAR-UK?
I got involved with AAR-UK as a voluntary fundraiser organising a number of events from Childrenís balls to fun days, Christmas fayres and awareness days within the local community through my daughterís dance school and childrenís school and nursery.
With my nursing and science background I put together a meeting with the University of the West of Scotland and AAR-UK.The purpose was to discuss future collaborations and most importantly how we could progress our biobank within Glasgow University and other research goals. After this successful meeting the AAR-UK team approached me to offer a role as their Fundraising and Research co-coordinator which I duly accepted without hesitation. Initially fundraising was my focus, ensuring we could sustain the commitments we had, but before long the biobank and projects with Glasgow University and University of the West of Scotland became the main focus.
What is my Alopecia Story?
My Alopecia story began 14 years ago when I met my partner. His father has Alopecia Universalis which started in his early 40ís. Like many people affected by the condition he struggled to come to terms with his Alopecia and still to this day struggles with it.
I had not fully understood the impact Alopecia had on my father-in-law until my daughter at the age of 1 was diagnosed with Alopecia Universalis also. I recall a day out at Alton Towers, it started to rain which really upset her- crying, saying how much the rain was stinging her eyes. Her nose was also running constantly as she had also lost her nose hairs.At this point I realised the impact of not having those little nose hairs, eyebrows and eye lashes has on people who have lost their hair in these areas. Most people donít realise the actual function of these parts of their body and this is only one small problem that is associated with the condition.
As parents my partner and I struggled to come to terms with Sashaís Alopecia. At first, I worried what the future would be like for my daughter. As we already knew there was no cure or treatment that worked, we felt helpless. We felt that we did not have the answers that our daughter would one day want to know.
I decided to do everything I could to support a charity that was actively researching Alopecia and to show our daughter that although I donít have the answers right now, Iím doing everything I can to help find a treatment for children like her and adults with Alopecia.
As a family we have fundraised and helped our daughter to become happy and confident with or without her wig, which we will continue to do. We know that there will be many hurdles that we will have to face along the way. We will face them together and support her decisions so she will be in the best possible position to deal with the challenges ahead.
What are my hopes for Alopecia UK?
Iím looking forward to working with the new merged AUK team- working towards one of our charity goals of becoming a leader for Alopecia research, not only for national collaborations but eventually international collaborations, ultimately finding out why this autoimmune disease occurs and how we can control it.
I hope we will build a strong multidisciplinary research committee to ensure that we have a broad view of all aspects of Alopecia and how all the systems within the body interact.By achieving this we will pave the way for more funding opportunities for future projects and development of our Biobank.