The Neurological Alliance is inviting people with neurological disorders to share their experience of care during diagnosis, treatment and support in an online survey. They wish to gather data to see whats good, indifferent or bad about patient experiences in England. The Alliance speaks for 80 organisations so if you have a family member with HD you could help to advocate for positive change, improved future services and provision. The survey is open until 22 March 2019 and you can access it here http://www.myonlinesurvey.co.uk/NA18PAT/
Cake that HD
Date for your diary – Thursday 5th September 2019. Fundraising project ideas sought – watch this space for further developments…..
Plymouth University Archers raise £325 in aid of HDA
Archers from across the south west peninsular gathered at Lipson Community College for an indoor Archery shoot out. About 40 contestants from as far as Bristol & Mounts Bay, Exeter & Torquay came together on Saturday 8th December to test their skills with a range of bows from the traditional long bow to the modern Olympic style bows. It was also good to see a number of young people practising these skills.
Emma and UoP team captain Joe welcomed some members of the Plymouth HD support group, and it was interesting to see the routine, with safety being paramount of course in a room full of flying arrows. I’m not sure how many arrows were fired but is was pretty full on, with only 120 seconds to loose off 3 arrows, in waves before going forward to collate the scores and recover them.
The student volunteers had used the information pack to provide background information for HD awareness, and these supplemented Raffle and delicious Bake sale and coffee tables.
After drawing the raffle a head to head knockout tournament completed the day.
See Emma’s report Here
Thanks to UPAC and South West Archers for their kind support!
Zip Wire & Pasty Challenge done!
The cream of Devon met the jam of Cornwall at Adrenaline Quarry to experience the thrills of the zip wire once more….
Intrepid members of both county branches met up under the guidance of SHDA Charles Whaley to raise awareness and raise funds for the county branches.
All participants were awarded a Certificate & Pasty, and it was good to link up with our opposite numbers across the Tamar.
Charles said “Overall I think it should be around £2000 collected across Cornwall and Devon donations, when all is collected in. Money going direct to Cornwall, and Devon Branches and HDA HQ, some via Just Giving.”
Thanks to all the families, friends and supporters who came to enjoy the Barbecue afternoon at Silverton, and special thanks for our hosts Richard & Ann. The event raised £419.72 to help families in the county. Here are a few photos of the day.
Thanks to Plymouth City Council for arranging for Smeaton’s tower to be lit up for awareness week in Pink/Green, rotating every 5 seconds. I don’t know what the ancient mariners make of it – is it port? Is it starboard?
It seems they might also have dressed the Pavilions up for us as well!