An opportunity to be heard – CYHU GOING STATESIDE!!

Jessica Cook, Founding Director of UK organisation CYHU, has been invited to speak on behalf of the NF2 community at the Children’s Tumor Foundation NF Forum in Washington D.C this June. After discovering the positive impacts of the work at CYHU Maria Acosta, Clinical Director ofStateside The Gilbert Family Neurofibromatosis Institute in D.C, approached Jessica with the request to join a panel talking about coping strategies in chronic illness. She has humbly accepted this invitation and, accompanied by CYHU volunteer Laura Wrench, will take flight to the USA in just a few weeks time.

This exciting announcement is NOT simply news for the NF2 community, it is an opportunity. As part of the preparations for her talk Jessica has produced a questionnaire that, like the book ‘NF2: Our Journeys’, provides those affected by NF2 with the chance to share their experiences and make their voices heard. She would be delighted to receive feedback from fellow NF2ers and will use information collated from the questionnaire to ensure that her speech is representational of the community.

If you’d like to have your say you can find the questionnaire at