‘Last month we attended the 1st UK CHARGE conference. It was great timing – our daughter had been diagnosed with CHARGE 6 months previously. But, we were nervous about going – would we feel overwhelmed by meeting other kids and parents? Would we feel we belonged? Would the information we received increase or decrease our stress levels? The bottom line is, it was the most helpful intervention / event / weekend we had experienced since our daughter came into our world. Despite the complexity and variety that is CHARGE, we found a huge amount that was relevant and helpful both for now and in planning the future. We met some amazing and inspirational families. Ultimately, we felt that we had found a place we belonged. Our CHARGE family turns out to be full of courageous parents and very cool kids. If you haven’t met them, please don’t put it off; find a family day near you!’

‘Well worth the 5 hour journey to get there. We were already proud of our daughter but we left even more so after the weekend. It was tiring and emotional, educational and lots of fun – loved the Bollywood. … When’s the next one?’

‘I work in a school for children with physical disabilities and complex medical issues and support a child with CHARGE. I was fortunate to attend the CHARGE conference professionals day. I found the conference interesting and I feel that it will aid me in delivering more suitable support for him. The topics discussed highlighted the varying difficulties that people with CHARGE have and it made me more aware of the importance of sensory input. Martha Majors session was particularly useful, especially about modifying the classroom and her teaching strategies. I enjoyed seeing the pictures of the children who attend Perkins school and could relate to the comments that Martha Majors made’.

‘The subject matters of the workshops were relevant and meaningful. The presenters clearly knew what they were talking about and presented their material in a way that gave us an understanding of the topic while at the same time showing empathy and understanding of us the parents.’

‘It seems like a lifetime since the conference and parts of it are fading into memory behind the events of daily life. I will, however, always remember and cherish the experience and feel proud to be part of the group like this. The conference has helped me to make little and big changes in the way that I relate to my son. Not everything works for every child but I would be certain that every parent was able to take something away with them that helped them in their own unique way’.

‘Absolutely brilliant. Thank you so much for organising it for us. It was empowering, it released a lot of pent up emotion and was very informative. Please do it again soon!’