“I would not change being a trustee for the world”

Posted about 1 year ago By Dale Archer

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Happy Trustees Week 2019! To celebrate this annual event we’re showcasing the great work that ICAEW staff do as trustees – read on to be inspired about how you can also make a difference.

Helen Carter is Legal Policy and Compliance Manager at ICAEW and a trustee of Niemann Pick UK (registered charity number 1144406).  








Diane Waller is Committee Administrator and a trustee of the Hollie Foundation (registered charity number 1156216)


What motivated you to become a trustee?

Helen:  My daughter was diagnosed with a rare life limiting condition at the age of 2 years old. During the diagnosis process I reached out to a small charity called Niemann Pick UK. This charity was a lifeline for my family. Their clinical nurse specialist helped us cope in the early days of diagnosis and the charity staff offered us vital support, care and information. Neimann Pick Type C is a rare and devastating condition and families can wait years for a diagnosis. When it finally comes it is life changing and there is a strong feeling of loneliness and despair. Having NPUK by our side helped reduce our anxiety and helped us come to terms with a ‘different’ future for our daughter. We started to fundraise for the charity and raise awareness on a national level. I was invited to observe my first charity board meeting a number of months later and was truly inspired by the dedication and commitment of such a small team of trustees, most of whom had been affected in some way by Niemann Pick diseases. I joined the charity as a trustee in 2008 as I felt with my legal background and my own experiences as a parent could support the charity.

Diane:  My friend’s daughter was diagnosed with a life limiting disease, Niemman Pick Type C.  It was devastating when I found out her daughter had been diagnosed.  I didn’t know what to do and I just wanted to waive a magic wand and stop her from having this disease.  I decided that I wanted to do what I could to help in some way.   I really wanted to help families who were struggling with everyday life, to be able to make things easier if I could.

Tell us a bit about your charity and trustee role

Helen:  I am Vice Chair of Niemann Pick UK. As a small charity all the trustees have a vital role to play to support our small staff team and to ensure good governance of the charity. I have assumed the role of a parent advocate feeding back to the board on the issues and challenges facing our community and I also have a keen interest in fundraising and awareness, both of which are key for our charity. My legal background enables me to support the board in the review of agreements and other legal paperwork. The trustees work together to ensure we continue to deliver the best service we can to all our families from the point of diagnosis through to bereavement support.

In addition to my role on the board of NPUK I am also founder Chair of The Hollie Foundation, a grant giving organisation that supports families through the provision of grant funding for support, equipment and adaptions.

Diane:  I am secretary and trustee for The Hollie Foundation (1156216).  The charity was set up in March 2014.  I have been part of a board of 8 trustees since it was initially set up. All the trustees are volunteers. We provide funding for support, research and education for those living with life-limiting NP-C, a cause of childhood dementia.  To raise funds for our charity I have helped organised charity balls, skydives, curry nights, cake bakes and charity fetes.  I have made decisions on whether grants are approved or not.  Some of the grants I have helped approve are for garden adaptions, specialist equipment, sensory equipment and also grants for research. 

I am so proud to have been able to raise money and also be able to give grants that are needed.

What are some of the things you’ve gained from the experience of being a trustee?

            Diane:  I have learnt a lot.

  • I have learnt the resilience of the families is amazing: whatever life throws at them they just get on and deal with it.
  • Learning more about the disease NP-C and what effect this has on a person’s life.
  • I have learnt that members of the public and companies are very giving when I have asked for donations.
  • I have presented to large numbers of people (schools and companies) and my confidence has come on in leaps and bounds.  I would not normally put myself forward to do presentations but being part of the charity has made me deal with my self-confidence.
  • I have made many friends along the way.
  • Being able to talk to families and understand their issues has helped me look at the way I conduct myself and I try not to take things for granted.  I am more understanding of families who have disabilities and I try to think about how I would want to be treated if I were in their position.

Helen:  My work as a trustee of NPUK has had a huge impact on my life. Working with such an exceptional group of people who share skills, knowledge and experience to make a positive different to the lives of those affected by Niemann Pick is extremely rewarding. The charity has grown substantially since 2008 having gone through a rebrand and increasing its digital presence. It is now recognised internationally as a flagship organisation for Niemann Pick support and information.

What you would say to someone who is thinking of joining a charity board

Diane:  I would definitely recommend becoming part of a charity.  It is extremely rewarding, you get to help families even if it is only in some small way.  You get to understand more about the disease you are dealing with, you may get to meet the families you are helping which is so lovely.

It is of course very hard work, you have lots of important decisions to make and there is lots of fundraising to do and coming up with new ideas is not always easy.  Staying up to date with Charity Commission guidelines is a must, however, I would not change being a trustee for the world.  The feeling you get from helping families is amazing.

Helen:  I would highly recommend it. Being a trustee of a charity helps develop your skills in so many areas and has helped me to build new networks here and internationally. It has enabled me to understand more about the needs of those affected by rare diseases and the complexities of clinical trials, research and funding. NPUK holds an annual family and professionals conference and it is so rewarding to hear from families and professionals at this event about what great work the charity and staff team are doing and see first-hand the positive difference it is having on the lives of so many families. There can be nothing more rewarding than that.


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