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There is a team of volunteers who between them ensure the smooth running of the Red Robin Trust there are trustees, a support team and our partners who work together to ensure that everything we can possibly do to meet the aims – To find out a bit more about us read on.

Meet the Trustees

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<p>Charlotte Anwyll – Trustee</p>
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Charlotte Anwyll – Trustee

Founder of Red Robin Trust and The Maffucci and Olliers Assocation

Treasurer and General Manager

charlotte@redrobintrust.org

My name is Charlotte, I live in Leicestershire with my husband and two children. I work as a Youth Worker and as a Support Assistant within a School.  In June 2012 our eldest son Oliver was diagnosed at the age of 3 with Maffucci Syndrome/Ollier’s Disease in his right hand/arm. Since diagnosis I have been as pro-active as I can after realising very early on that there was very little information and support for individuals, families and professionals on these conditions. I started with launching www.maffucciandolliers.co.uk in April 2013, followed by arranging our first conference in London in October 2013 of which is now an annual event bringing together individuals and professionals. I have been a keen fundraiser for research into these conditions and in 2014 after making contact and becoming good friend with Sarah Smith, another Mother on a mission we launched the Red Robin Trust  to further the work with Maffucci Syndrome and Ollier’s Disease. I have made contact with individuals and professionals all over the world, it is this that gives me my drive and passion for the future of those living with these rare conditions. 

 

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<p>Sarah Smith– Trustee</p>
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Sarah Smith– Trustee

Founder of Red Robin Trust

Schools, Groups and Community

 

My name is Sarah, I have a background in music (fiddling to be precise) fine art and holistic therapies. I currently work as a Deputy Manager for the National Autistic Society with adults with Autism, Learning disabilities and challenging behaviour so throw in 3 cheeky daughters a hubby and our adorable terrier Merlin and life is hectic!!!
I found myself searching for answers about Ollier’s Disease when my middle daughter was diagnosed with the condition when she was 3.
We have spent the last 6 years looking for answers, advice, prognosis, battling with schools and liaising health professionals to get what we need to make life as it should be for a 9 year old as well as dealing with the highs and lows of living with the condition as she grows. 
After searching and realising there was little factual information and support from people that understood what we were going through and facing I realised I needed to find like minded people. Dealing with a rare disease and the fact treatment is often trial and error can be difficult. After many chats with Charlotte we realised we were like minded and were both passionate about getting something off the ground so others would never feel as isolated as we did when being given that diagnosis…. with the bond between 2 mamas forged the idea of The Red Robin trust was now born.
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<p>Mathew Anwyll – Trustee</p>
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Mathew Anwyll – Trustee

Graphics and Design

Founder of The Maffucci and Ollier's Assocation

 

My name is Mathew, husband to Charlotte and father of Oliver (5) and Joey (3) Having graduated from Coventry University with a degree in Consumer Product Design, and then successfully completing a PGCE at Loughborough University, I now teach Graphics and Product Design in a Leicestershire upper school. Born and raised in County Durham I am a very proud northerner, and enjoy the long journey home as often as work and family life allows. Olivers diagnosis was a shock, and at times is still difficult to understand, but we have made a conscious effort to develop our knowledge through the development of the website and this trust, and I aim to bring all of my skills and experience to support the future of them both.

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<p>Sarah Oliver – Trustee</p>
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Sarah Oliver – Trustee

Corporate And Events

 

I am Sarah Oliver and a trustee for the Red Robin Trust. I live in Hertfordshire with my little boy and my partner. I have been working in the travel industry now for over 14 years and have had lots of experience organising and planning events as well as helping companies plan their travel programmes. I currently work full time as a sales manager. As a family we enjoy many different activities and like to use all our spare time doing things together and visiting family and friends. I do also enjoy my ‘alone time’, normally at my morning spinning classes.

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<p>Cedric Canham – Trustee</p>
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Cedric Canham – Trustee

Data Protection & Equalities

 

My name is Ric Canham and I live in Somerset. I’m an administrator for a prestige motor dealer group, married to Karen who is a secondary school head teacher and we have a daughter. I’m a member of The Rotary Club of Wrington Vale and I was President in 2009-2010; I’m currently serving my second year as Assistant District Governor with six Rotary Clubs to look after. My Club recently did me the great honour of electing me as a Paul Harris Fellow ‘In appreciation of tangible and significant assistance given for the furtherance of better understanding and friendly relations among peoples of the world’. I am known for being someone who will try anything (once!)to raise awareness or funds for a given cause.

I first became aware of Ollier’s Disease and Maffucci Syndrome through Tony Thurling. It quickly became obvious to us both that these conditions were not getting any exposure and that individuals and their families were struggling to get help and information. When the prospect of starting the Red Robin Trust was proposed, Tony and I were immediately engaged and I have committed to offering any help I can and have pledged to use my skills, experience and contacts to further this worthy cause.

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<p>Tony Thurling – Trustee</p>
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Tony Thurling – Trustee

Marketing and PR

 

My name is Tony Thurling, I live in Somerset and have four children and eight grandchildren. My business and background of work has been in advertising and marketing for more than 50 years and continuing.   I keep myself active attending the gym, I enjoy gardening, cooking, sailing and I am a Rotarian and have recently been elected as the President of Wrington Vale. It was through being a Rotarian and participating in one of our events, that I became aware of Maffucci Syndrome and Ollier’s Disease and I was keen to learn more, I made contact with Sarah Smith and Charlotte and was keen to be a part of the Red Robin Trust, I will use my skills and experience and sharing these within my role as Trustee for the Red Robin Trust.

 

 

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<p>Jantze Smith– Trustee</p>
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Jantze Smith– Trustee

My name is Jantze, I have grown up under a very sporty influence participating in club sports under 18’s Bristol boys Football and under 18’s snooker champion, skiing and cycling. I love the outdoors and with our tribe of 3 girlies and the terrier merlin we love camping in our teepee, walking, finding waterfalls, mountains and finding beautiful places to photograph.
I run my own business in shoe repairs after spending 25 years training to be ranked in the top 10 shoe repairers in UK. Our middle daughter was diagnosed with Ollier’s disease when she was 3. The bomb shell of what we were facing was huge and overwhelming and we quickly realised we were in need of some resource of factual objective information about the condition and support from people who understood… thus the Red Robin Trust was born.

 

Meet the Support Team

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<p>Paul Smith</p>
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Paul Smith

Web Developer and Hosting

webmaster@redrobintrust.org

Hey i’m Paul AKA Smiffy to the  maffucciandolliers members , I live in Peterborough and I am married with 4 children and 5 grandchildren. I work full time as a qualified Electrical/Mechanical Engineer and in my spare time I have a keen interest in IT and building and developing websites. After the diagnosis of my nephew I offered my skills to support in the development and hosting of the website www.maffucciandolliers.co.uk,I also support and attended the conference and now the Red Robin Trust. I volunteer my time and have learnt so much over the years about these conditions and am pleased to be supporting.

 

 

Meet the Medical Advisory Board

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<p>Mr Robert Ashford</p>
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Mr Robert Ashford

Orthopaedic Surgeon

Mr Robert Ashford undertook his general orthopaedic training in East Anglia and Yorkshire and sub-specialist training in lower limb joint reconstruction and tumour surgery at the Royal National Orthopaedic Hospital, Stanmore and the Royal Prince Alfred Hospital, Sydney, Australia.

He was appointed as a Consultant Orthopaedic and Musculoskeletal surgeon at University Hospitals of Leicester NHS Trust and the East Midlands Sarcoma Service in 2007. He is lead clinician for the East Midlands Sarcoma Service and is the East Midlands Senate Member for the NHS England Sarcoma Clinical Reference Group.

Mr Ashford’s practice is the management of bone and soft tissue tumours, skeletal metastases and he has an elective orthopaedic practice in lower limb arthroplasty. He has a specialist interest in palliative orthopaedic surgery and surgery for skeletal metastases. Mr Ashford has published extensively in these fields and has been awarded his MD for research into skeletal metastases in breast cancer.

In 2014 he was selected as one of the British Orthopaedic Association’s ABC (American-British-Canadian) Travelling Fellows visiting 12 centres in America and Canada.

He is delighted to join the Red Robin Trust and the Maffucci and Ollier’s Association as medical advisor and working with them to develop groundbreaking research into Maffucci’s and Ollier’s.