Conference Chair, Janice Brooks writes: .......

"The NPDG (UK) Annual Family Conference and AGM this year returned to the Holiday Inn, Ironbridge, Telford over the weekend of June 19th-21st, where we were welcomed by many familiar and friendly faces.  Joining us this year were several new families, attending for their first Conference experience and we were also glad to be reunited with many old friends. Delegates travelled across the UK, from France, the USA and Slovenia. The theme of the Conference ‘A Shared Vision’, reflected the idea that by working together - parents, support groups, clinicians, researchers, scientists and fundraisers - we will be better able to achieve our common goal, to find effective treatments for the Niemann-Pick diseases.  We were once again privileged to welcome Speakers from across the world, many who travelled a great distance to spend the weekend with us. These speakers are now old friends of our families and members, and are well aware of the difficulties we face both in understanding the science and, in our daily lives living with challenges of the Niemann-Pick diseases. We may sometimes find their presentations baffling, or complex, but we take away a feeling of encouragement and reassurance, that there are such excellent people trying year after year, to find us the answers we so desperately crave. We thank them for so generously giving up their time to share their knowledge and expertise with us. We are also very grateful to those families who shared their experiences of the Niemann-Pick diseases with us. Shawreen Van Aarde, Sheila Simpson and Mark Perkins each provided their own unique and touching views. 

The Children and Young Person’s Activity Programme was once again a great success, with trips to Enginuity and the bowling alley, plus arts and crafts and fun in the swimming pool. On the Saturday evening the children, as well as more than a few adults, were entertained by the “Animal Man”. Pictures from Conference 2009 can be seen by clicking here. Many thanks go to all the dedicated volunteers who make this programme possible year after year – we could not do it without you!!

Plans for Conference 2010 are already underway; as always, we would welcome any suggestions as to how we can tailor the conference to meet your needs. So, if you attended this year and have yet to submit your feedback, or are thinking about attending and would like to see a particular speaker or subject covered, please email your comments to sue.npdg@tiscali.co.uk.  We always consider your feedback and comments when planning this event, in the hope that we are able to meet the needs and expectations of you all."

Matthew’s First Conference - Helen Brook, mum to Mathew, age 11, writes:

“This year we decided to take Matthew to his first Niemann Pick conference. He was very excited and studied the children’s programme in great detail rehearsing and discussing what he was going to do with everyone who would listen (and some who wouldn’t).    He was introduced to Phil, his helper on the Saturday morning an immediately became his best friend. He loved everything about the programme, the bowling, swimming, the discovery centre, the coach ride and of course the food.   Since coming home he has talked about Phil and the weekend constantly and has invited everyone he meets to come next year.

We would like to thank Phil and his family for taking such good care of Matthew and everyone who organised all the fantastic activities. (The animal man was great, can he come next year?).    Matthew will definitely be back next year and he will probably bring his brother and sister too!”

Picture shows Matthew and Phil