LPUK delegates had an insightful day at the Cambridgeshire RARE Disease Summit. We met lots of different people, some of whom will be very useful contacts to LPUK, for example Public Health England, Orphanet and Genetic Alliance; these contacts will help us develop LPUK as a charity. We also met some other charities/organisations which will be useful contacts to help support our members e.g. SWAN, MPS; which we can direct our members to, to get additional support. Additionally there was the oppotuniay to raise awareness of dwarfism and LPUK, and spoke to quite a few people with regards to this e.g. scientists, researches, businesses etc. many of whom were unaware of the facts/figures/experiences regarding dwarfism and all were very open to listening and learning.
Overall we felt the day was a success.
We have been invited to attend their event next year, and more details of this will be announced in due course.
At this years convention Little People UK are holding the Positively Unique Awards for the third time, where we will celebrate the achievements of members of Little People UK!
This has been kindly sponsored by Jay Moyes.
We asked for nominees in three age categories -
We asked that each application must show why the person nominated is Positively Unique; applications were open to people with dwarfism AND average height members of LPUK.
The nominations were sent, anonymously, to the LPUK committee for voting and a winner from each category decided.
The winners are -
August saw the culmination of months of training for our Ride London Surrey riders, where they completed the 100 mile cycle ride starting in at the Olympic Park and finishing along the Mall, we were there to greet them in Green Park, to offer our support and thanks for undertaking such a huge task. The LPUK 2019 riders were: Leon Hellyer, James Hays, Mark Hayward, Andrew Parnowski, Chris Glazier and Richard Scott-Jenkins, along with Gareth Bussey and Richard Bannister who wore LPUK cycling shirts to raise awareness.
With the Collaboration and huge efforts of Mark Trimbee, working with Eugene Grant of Restricted Growth Association UK and Rebecca Nuttall of Little People UK we are delighted to announce that Harper Collins have listened to us and made the relevant changes needed to these titles. No ‘M’word exists in the reprints that have been published July 1st this year. Well done and thank you all for your support.