Meet our Trustees and volunteers, very special people focused on making a change.
Education: BA English, Sussex University
Interests: Music, Film, Travel, Food
“Nicole is officially my cousin, but feels more like a sister to me. I’ve watched her grow from a feisty, no-nonsense little sprog, who always wanted to be the witch rather than the princess (witches are way more interesting), to an even feistier, tough little cookie of an eight year old. Not only am I extremely proud of her, I also look up to her and admire her endless strength and courage. She’s beautiful, thoughtful and intelligent and I know she is going to grow up to make the world a better place. I’ve become a trustee to make her road over the next few years as happy and pain-free as possible, and help her live life to the full. I also want to help raise awareness of her rare condition, and as Nicole puts it, help her and other people ‘have lots of sunny days!”
Education: BA History, University of Sheffield
Occupation: PR and social media consultant, Third City
Interests: Food, books, film, sport
“Nikki is a remarkable young lady with the world at her feet. I got involved to help ensure her AVM doesn’t get in her way.”
Education: BA Fine Art, Kingston University
Occupation: Communications Officer
Interests: Making Art, Watching Films/Documentaries, Train Journeys, Skiing, Playing Netball, Good Food
“I imagine Nicole will be a bit like Gaudi was (the architect); he had a long term illness as a child but went on to craft the urban landscape of Barcelona. Nicole is a brave and feisty girl and I know she is destined for greatness, I see The Butterfly AVM Charity as her start to a healthy future.
I became a trustee of The Butterfly AVM Charity to do everything I can to help abominate this horrible illness in spite of the fact I have no medical training whatsoever! I want to help improve quality of life for my beautiful little cousin Nicole and support others suffering with AVMs by building a support network for them, and becoming a help station for those yet to be diagnosed.
What upsets me about Nicole’s medical condition is not only the impact it has on her health but what it means for her lifestyle; whether it’s missing school, not playing sport, having bleeds or being carted off in a flashing ambulance on occasion, these are not things she should have to endure.
My role as a trustee is to expand on the charity brand by designing material for web and print based communications, as well as creating and developing stylish merchandise for fundraising with my partner in crime, Paul. So far, I have designed the charity logo along with various bits and pieces for charity fundraising events, including some late night stitching with Aunty Tani (Nicole’s mum) making bags for the Christmas Fair! Hopefully I am able to offer a range of creative ideas and skills that will help push the charity forward…”
Education: BA Hons Contemporary Popular Music
Interests: Music (BIG Joni Mitchell fan), Painting, Obscure Cinema (Favorite movie is Cult classic Harold and Maude), Volunteering, Yoga, Laughter Therapy. I’m proud to call myself a bookworm.
“In a beautiful paradoxical world full of pain, I truly believe that the only true joy comes from sharing with others. Little Miss Christou is an inspiration to us all. If she she can smile, dance and want to spread joy, then most of us have no excuse. I want to help Nicole and The Butterfly AVM Charity to proactively create awareness and raise funds to one day find a cure for this rare disorder.”
Education: BSc Product Design and Technology (Hons), Loughborough University
Occupation: Innovation Development Manager, Cancer Research UK
Interests: All sports, health & fitness, technology, innovation, business
“I hope to utilise my knowledge of design, innovation and fundraising to help raise money to fund much needed AVM research. I feel inspired by Nikki’s story and am amazed by her endless courage. From my efforts and the efforts of the charity I hope that Nikki, and many more suffering with AVMs, have better methods of treatment available in the future.”
Education: BA English Literature and French, Reading University
Occupation: Senior HR Consultant
Interests: Books, Theatre, Travel, Food
“I’m honoured to have been asked to be a trustee for the Butterfly AVM charity. Nicole is my little cousin, her strength and courage are both inspiring and touching. For an 8 year old she has been through a lot but always with a smile on her beautiful face. I’ve become involved in the charity as I want to help Nicole in whichever way I can: to spread the word and raise awareness of AVM, to help raise the funds to go into research and ultimately to help Nikki be happy and keep that smile on her face.”
Education: BA Economics, Reading University
Occupation: Finance Director
Interests: Sport (mainly watching but also getting off my backside to Run, Cycle and Snowboard), Music, Theatre, Travel and Food
“I was introduced to the Butterfly AVM Charity through Nicole. Nicole has a unique spirit and always has a smile on her face despite having to face every day with great courage; she is a lesson to us all that each day is a gift that should be shared. For me, being involved in the charity is an opportunity not only to help fund research into a rare and much under-funded condition, but it is also the opportunity to show that with action you can bring about change. The charity has achieved so much, already raising awareness and putting in place a community that together will be stronger, but the charity doesn’t want to stop there and has grand plans and I am looking forward to lend a helping hand while the Butterfly AVM Charity and Nicole reach their objectives.”
Education: MA Personnel and Development Westminster University
Occupation: Assistant Finance Director – Development and Professionalism, Coach, Visiting University Lecturer
Interests: Photography, Eastern Philosophy, Spiritualism, Music, Developing Others, Revolutionary, Travel and Food
“I have known Nikki since she was born, and she has inspired me through her strength, courage, energy …..and especially through her smile to help her find a cure to enable her to lead a normal life….but to also help others too..Nikki has helped me fulfil a need to help others. My intention is to try and do so through the butterfly AVM charity. Fingers Crossed…..we succeed in making a difference to Nikki and others who are suffering from AVM.”