Building a charity together
On the 11th August 2012 NEC UK was set up as an informal group on social media by Susan Spencer whose son Tobias, sadly died as a result of NEC at just 6 days old. After becoming involved with and volunteering for a local bereavement group Susan recognised how beneficial peer to peer support could be and identified the need for a space where families specifically affected by NEC could come together too.
A Facebook page shortly followed to help raise awareness of NEC to the wider public and to promote the group.
Susan was quickly joined by fellow NEC parent Sam Wallace who has been instrumental in the administration of the group over the years.
In August 2016 a core group of NEC parents who have had different outcomes for our babies came together to discuss how we could work towards making NEC UK a charitable organisation after we identified the need for a more official structure specifically for NEC. This would enable us to offer much more support to families affected by the condition including in practical ways we could not do as an informal group. It would support us to raise awareness on a greater scale, raise funds into further research and form relationships with experts, care providers and other organisations to help give NEC a voice and work together towards improving outcomes for the babies and families affected by the condition.
In April 2017 we were ready to begin the formalities of this process with the first four trustees, Lyndsey, Nicola, David and Susan taking position. We were further supported by a small team of parent volunteers to assist in the day to day running of the charity.
NEC UK obtained HMRC charity recognition from April 2017 and in December 2018 became a registered charity. Our charity number is 1181026.
2018 NEC UK was able to grant funding to support NEC research alongside providing practical support to families affected by NEC.
2019 has welcomed existing parent volunteer Maz as a trustee to the charity and the first 4 members of our medical advisory panel, Nick, Janet, Chris and Clara have joined us. We also welcome new volunteer parents Laura and Colleen to the team.