#TrusteesWeek This is What a Trustee Looks Like Our final Trustee Profile for #TrusteesWeek is Helen Carter who is Chair of the Hope for Hollie Foundation and proud mum to 9 year old Hollie who is fighting NP-C and who is the inspiration behind the Foundation. This is what Helen had to say about being a Trustee of both the Hope for Hollie Foundation and Niemann Pick-UK; When Hollie was diagnosed with NP-C at age 2 our world collapsed around us. We had absolutely no idea that we were at risk of passing on a fatal genetic condition. Our lives changed that day and we were suddenly facing a very different future for our beautiful daughter and our family as a whole. As the disease was so rare we soon realised we would need to become advocates for Hollie and fight to make sure she had the best chances and opportunities in life. It was at this point in time that we realised just how important the work of small charities are to families like ours, society and the medical profession. In our desperate search for information and support we came across the patient support group, Niemann Pick (UK). I really wanted to learn more about the disease and this charity enabled this whilst also providing vital support where no one else could. I observed a few board meetings and soon realised that the charity had a board of trustees that was mainly made up of individuals whose lives had somehow been touched by this disease. Their commitment and dedication was so inspiring that I wanted to contribute in some way. In 2010 I became a Trustee of Niemann Pick UK taking on the role of parent advocate. I continue in this role today. This charity has given me so much over the years not only personally but also professionally, giving me the opportunity to meet great people and network with truly dedicated professionals and researchers whilst providing invaluable support to so many inspiring and beautiful families, In 2014 after many years of running the Hope for Hollie fundraising campaign locally and gaining huge support the Hope for Holle committee decided it was a right time to register the Hope for Hollie Foundation as a grant giving organisation. As a grant giving charity it was felt that we could help enhance the support already available to NP-C families through grant funding for such things as specialist equipment and other social or medical needs as well as being able to provide grants to other common interest organisations to help with the continuation of support and information services and also fund research. Working in collaboration the NP-C community is making a difference to those fighting this disease. Being a Trustee of two charities is hugely rewarding. It has enriched my life and made everyday easier knowing that together we really are able to change lives whilst working towards are ultimate goal of a viable long term treatment or cure for NP-C. #DreamingofaCure #MakingaDifference
Posted on: Thu, 13 Nov 2014 19:00:34 +0000
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