Jenny Charman, co-founder of fundraising super team ‘Harvey and the Brave Little Soldiers’, shares her story of her first NPUK Annual Family Conference & Interactive Workshop:
What is your connection to NPUK?
I helped co-found the group Harvey and the Brave Little Soldiers (HBLS) in honour of my nephew, Harvey. We are here to raise vital funds for NPUK’s ongoing research and for the incredible support they provide to families. I initially opened a JustGiving page telling our story in July 2017 with the aim of raising £1,000 for NPUK. The support was overwhelming and we smashed that target – our total now stands at close to £20,000! This has been achieved by climbing up mountains, holding a clubbercise night, sponsored runs, bike rides and lots of other fantastic fundraising events. We want to put the FUN in FUNdraising (cheesiness intended – ha). Please visit our website for more info and to see pictures of these events: www.harveyandthebravelittlesoldiers.com
What was your first impression of the Conference weekend?
I really was not sure what to expect at the NPUK conference but the whole weekend was amazing. I came away completely in awe and inspired by the many people I had been lucky enough to meet and I couldn’t wait to share my experience with my family and friends. A resounding theme of the weekend and what I took away was hope. Hope for the future and hope for now. Families in similar situations were able to share stories and experiences. The weekend was able to act as a sanctuary and enable people to get away from what they have to deal with from day to day. I was also amazed by the number of researchers and scientists that were at the conference and their willingness to share their knowledge not only during their official talks but just in normal conversation. During my first evening at the conference a very kind family introduced themselves and told me that by the end of the weekend it would feel like I have known everybody for ages. This sounded a cliché but certainly rang true after the two days.
Our community often refer to NPUK as a “family”…why do you think this is?
At times like these and events like the Conference, NPUK could not do any more for their families. Everybody is made to feel welcome and there is a real family feel. Many people during the weekend actually referred to everyone there as their “NP Family”. Day to day, NPUK provide emotional, as well as practical support and have developed a strong family support network, helping to reduce feelings of isolation and despair.
What was your Conference highlight?
On the Saturday I was lucky enough to go to Wicksteed Theme Park with the Children and Young Person’s Activity Programme, and meet lots of the amazing children and volunteers, many of whom have attended the Conference for many years. As they kept saying “once you come to one, you come back”. It really felt like I was made to feel like one of the family and we all had so much fun, despite the rain! The children didn’t stop smiling all day, and neither did I. I will definitely be coming back next year and I look forward to seeing everybody again.
What would you say to someone considering joining us at our next Conference?
If you are questioning whether or not to attend next years conference what I would say is ask yourself this: Are you affected by Niemann- Pick directly or indirectly? Would you like to meet people who understand (REALLY understand) what you are going through? Would you like to hear about all the latest Niemann- Pick research happening right now? Well if you answered yes to any of these questions then I wholeheartedly recommend you attend as you will not be disappointed. Together, we can help NPUK to continue their amazing and holistic charity, which so many families would be lost without.
Thanks for sharing your story Jenny!