We want to thank our supporter friends who have so generously supported us for our journey to Chicago to meet with specialist BPAN doctors and researchers. Our trip is planned for 26th May and we are looking forward to meeting the other families who are going to the NBIA 2017 conference like us. This is just the start of our longer term journey to raise awareness about BPAN and hopefully to encourage further research in the UK. Thank you once again from the bottom of our hearts for all your messages and generous donations to this page.

Dear Supporter friends, As we are so close to our crowdfunding target of 12k we have decided to extend our site till mid April. We are eternally grateful to everyone who has been involved and given already. Awareness of Emilie's condition BPAN has increased, and because we have been so well supported, more opportunities will arise I'm sure. Our appointment with the specialist doctors has been confirmed for 30th May in Chicago before the start of the NBIA conference. We plan to create a blog so people can follow our progress. Thank you. :)

Hi supporter friends, we decided to extend the time on the giving page as so many of you are still seeking to help. There are so many of you to mention though recently Stuart Neil and colleagues from Cemex completed a sponsored walk, with support from many of their suppliers. Thank you to all of you, especially. So many of our local friends are working hard behind the scenes to make this happen for us. You know who you are and thank you so much. Miracles can happen - I can feel it in my heart.

Hi, we have completed our second week of fundraising, and the support has been sensational! Thank you so much everybody! Hope we can that in person to some of you when we see you next. For those of you we have never met, or you know of us through being linked by friends or colleagues, your kindness is really appreciated. We are on our way to USA, travel plans made, thanks to Pam Roper. We need to keep the fund going to add to the Research. We have some events planned too so please look in on Emilie's website. www.fundraisingforemilie.org.