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Cake that HD  

Date for your diary – Thursday 5th September 2019.  Fundraising project ideas sought – watch this space for further developments…..

Pompeii  or Bust Banger Challenge

Sarah Irvine (nee Philips) better know to some of you as the nurse involved in HD -Enroll in Exeter will be setting off in her ageing VW with her friend to drive to Pompeii in Italy, all in support of HD!  Starting in St Austell on Sept 28th they will join in with 100 other teams following a proscribed route, enjoying sightseeing, before returning in a more leisurely fashion (if the vehicle holds out!)   Sarah would like your support in spirit, or better still in monetary terms and has a Just Giving Page at

Sarah’s Just Giving Page

Sarah will be setting up a blog so maybe we can follow their adventures – watch this space for updates…

 

Summer Barbecue

  Saturday June 22nd saw about 30 branch members and supporters (well a box of 30 beefburgers dissapeared) meet up in Richard & Anne’s garden at Silverton for an afternoon barbecue.  Raffle prizes were generously donated and a total of £145 was generated towards branch funds.

The weather was fair for us and our thanks are due to our hosts and all who made the day and enjoyable event. 

The next Devon get together  will be  on Saturday 14th September (format to be decided), in the afternoon.  Mark up your diary and watch this space.

Awareness week 13 -17th May

To mark the start of Plymouth Lights Up volunteers from the Vintage Fire Heritage Museum brought a 1936 fire engine up on Plymouth Hoe.

The appliance acted as a base and feature for us to do general awareness with the public. Many thanks to Gill & Adrian, family & friends who helped out with a tombola table.  People were very generous as well

 

A couple of our early visitors were from the states and they said “Sure we know about this, Woody’s disease” Turns out the lady used to live a street away from Woody Guthrie on Cony Island.

Lights up HD has once again join the global effort of lighting up public buildings, and thanks to Plymouth City Council for letting us come on then Promenade for the afternoon and lighting up up Smeaton’s tower on Plymouth Hoe in rotating Pink & Green again, plus Mountbatten Tower.

 

 

Neurological Alliance Survey 

 

 

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/

 

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.”

 


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