We are a registered charity with a board of trustees - Each of our trustees has a personal reason for wanting to give their time and effort for the charity - Enjoy starting to get to know them them from their stories below.


 
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Michelle Walkley
Joint Chair & Compliance, Accounting, Data and Campaigns Manager
CHC Hi Blue RGB 500pxthere, I'm Michelle and I'm mum to 3 children and also have 3 grandchildren.  My middle child, Alliza-Lily, was diagnosed with CHI at 6 days old and you can find her story here on the website.
 
When I left my previous job to go on maternity leave, it was always my intention to return to work following the birth of Alliza-Lily.  Life, as we know it can, threw a curve ball and I'm now a full-time mum and carer.  My daily life now consists of Alliza-Lily's medical and feeding regimes along with physio and various other therapies.

Since Alliza-Lily's diagnosis, I've always wanted to do more to raise the profile of Hyperinsulinism.  I'm a Trustee and Co-Chair of the CHC, with a lead in Data Protection, Compliance, Accounts and Campaigns and I am proud to be part of a 'family' that are dedicated, passionate and strong advocates in raising awareness of such a complex condition.

As for myself, there is very little 'me' time but on the odd occasion I like reading, baking, knitting, and the theatre.  I am also a Parent Governor at my daughters school leading in medical needs.

 


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Sarah Dearman
Joint Chair & Project, Peer-Research and Campaigns Manager

CHC Hi Blue RGB 500pxmy name is Sarah.  My son Liam was diagnosed with Hyperinsulinism at the age of 13 months, he is now 16 years old.   After graduating from University, I became a fully qualified Financial Advisor.  However, after Liam’s diagnosis and neurological complications became apparent, I was unable to return to work and became a full-time carer.  I feel very privileged to be a Trustee of The Children’s Hyperinsulinism Charity.   I am passionate about supporting families and raising awareness.  I am proud of how much our Charity has achieved and look forward to the exciting projects coming up. 

As Joint Chair and Project Manager, I have been at the heart of all our major campaigns, fundraisers, projects and events. I love the challenges and diversity this role brings, there is always something happening and it's fantastic to be part of such a great Charity Team. 

Any spare time is spent with my family and my two boys Liam and Mark.

 


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Kirsty Pope

Fundraising Manager

CHC Hi Blue RGB 500pxI'm Kirsty and I am mummy to 7 year old Imogen who was diagnosed with CHI just before her 1st birthday, after spending many months in and out of hospital.

I work full time in the housing industry as a Sales Manager which I love to bits but it is very much an industry I fell into after having to give up my nursing studies when Imogen was born and quite poorly.

When I'm not busy at work and Imogen is at school (or asleep!!), I enjoy going to the gym, reading books, watching TV dramas and organising fundraising events!!

I have helped organise lots of events since Imogen's diagnosis including casino nights, raffles, a teddy bears picnic and Virtual Runs for the CHC!!

Family time is very important in our house as we spent so much time in hospital when Imogen was little; on our family days together we enjoy taking our dog Barney out on long walks, going on bike rides, going out to the cinema and going for meals out!

It was a great honour to be asked to become a trustee and I have loved being a part of the CHC family for past 2 years!!

 


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Amanda Dean
Family Supporter and Networking Manager
CHC Hi Blue RGB 500px My name is Amanda and I am a mum of 2 . My youngest son William was born with Hyperinsulinism. 
 
Before I had William I worked full time as a manager of a Learning Disabilities Home for Adults. I was the registered manager and was in charge of the day to day running of the home, staff and service users . I spent my time working alongside social workers, health care professionals and CQC. I always planned to return to work after having William but  unfortunately due to his high medical needs and development delays this was not possible. I became his full time carer. 
 
I love being a trustee and raising awareness for this amazing charity. In my spare time, when I get it, I love running.  I run with a local running club who have helped me train for a half marathon. I also love holding fundraisers and raising awareness for William's condition.
 
This journey is certainly tough at times but because of this charity I know am not walking it alone. 

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Mark Fisher
Communications and Brand Building Manager

CHC Hi Blue RGB 500px I am Mark.  My wife Susannah and I joined the Hyperinsulinism family in the spring of 2015 when our beautiful son Hector came into our lives.  Like most of us, we spent what seemed like forever living in neonatal ITU whilst different diagnoses were proposed,  new treatments tried and whilst we began learning to manage CHI.  What a journey it has been.   We were lucky to have a fantastic team surrounding us, and an early genetic diagnosis.

I am so privileged to be a trustee, and have an opportunity to give a little back having taken so much solace from other parents via the various conferences & facebook pages that got Susannah and I through the earliest months of Hectors diagnosis. 

I have spent my entire career working in the pharmaceutical industry and now realise that for the last two decades, I have just been learning the skills I needed to make sure that I could be an effective part of the charity and better enable us to support families, engage and inform medical professionals, and challenge the status quo among those who can and will make a difference to the next generation of families who will have to learn to live with CHI.


Special mention & thanks go out to Adrienne, who after such vallient contributions to the world of CHI and Diabetes has chosen to step down from her role as secretary.

 

Adrienne Burton

(Formaly Secretary)
Jessica & Adrienne

CHC Hi Blue RGB 500pxI'm Adrienne and have one daughter, Jessica, who is now in 2018 is a happy 18 year old, she was born with CHI.  Jessica’s story can be read on this website.

I’m a Law Costs Draftsman for the last 3 years having worked as a legal secretary for 30 years for the family firm for almost 30 years.  My life changed dramatically in 2000 when Jessica was born.   I had to learn very quickly how to look after a baby with CHI and with diabetes after the removal of Jessica’s pancreas due to CHI.  The emotions of having a child with a chronic condition are extreme as well as having to learn the practical side of it very quickly.   

However I managed to turn this into a positive for us both.  I am heavily involved in the world of paediatric type 1 diabetes.  I’m a parent representative for the South East Coast and London Paediatric Diabetes Network working with clinicians and other medical professionals to shape the care for children with diabetes in the UK, I am the vice chair of the Families with Diabetes National Network, a co-ordinator of the UK Children with Diabetes Advocacy Group and I help families around the world with Type 1 Diabetes and CHI.   I also started the HI Fund along with my friend Julia Killengray back in 2003.  This is a Fund within the Special Trustees Charity of Great Ormond Street Hospital for Children and it supports research in CHI.   We also have a support group on Facebook which has grown over the years and I am one of the admin for that group.

We love going away on holiday when we can and I enjoy spending time with my family and friends.  When I find a rare minute I also find nothing more relaxing than reading, Facebook :) and Twitter and going to the cinema.

 

The Childrens Hyperinsulinism Charity

The Childrens Hyperinsulinism Charity
Registered Charity Number: 1165562

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