Reflections on our Family Weekend and AGM 2016
HDA Chief Executive, Cath Stanley, reflects on this year’s HDA Family Weekend and AGM, held in Telford from 4 - 6 November.
Wow, what a weekend, it was amazing! The buzz in the air on Friday night as old friends and new met up for their annual catch up. We were treated to a performance from the youth theatre group that is part of Highly Sprung Performance. It was called when you wish upon a star. The story looked at a young person who is finding life difficult, for unspecified reasons, and chooses to make a wish on a star. Magically the star comes to life and the young person is taken on an inspiring journey through the sky. By the time they are returned to earth they have realised that all the strength they need to cope with difficulties can be found in the people around them. It was inspiring and a different sort of Ice breaker than we had experienced before.
Saturday dawned and more delegates arrived. It was so lovely to see so many families coming to enjoy the weekend. Andrew, our Chair gave a brief introduction to his background, explaining he is from a fundraising background and his mum had HD. He talked about his first family conference, and how scared he was, but how welcome and inspired he felt afterwards. I then gave a brief update as to what the HDA had been up to in the last year and some future plans. The highlights being that we have provided support, advice and guidance to 13,809 people living with HD, 95% of people felt the visit by their SHDA helped them. We are supporting 50 families affected by JHD, our telephone helpline dealt with 18, 000 calls, our branches, support groups, message board and social media feeds give the opportunity for peer support. We provided 414 training sessions to 4304 health professionals and ran 2 certificated three day courses and three conferences with key note speaker Jimmy Pollard. Raising awareness remains one of our biggest challenges so the long running storyline on BBC’s Casualty which had viewing figures in excess of 5 million per episode was a fabulous opportunity to get HD known outside of the HD community, in addition to this we had an advert in the financial times, launched a video appeal, had an article published and participated in several BBC radio 2 and 4 shows. I talked about plans for the future including our plans to make MP’s aware of the need to put pressure on the Department of Health to produce NICE guidelines and the fact we have received funding to look at developing a care home accreditation scheme.
Most importantly we took the opportunity to thank all of our amazing volunteers for everything they do to support us. Finally we took the opportunity to thank Jackie Harrison, Lynne Burgess and Brenda Wylie for their amazing endeavours with their fundraising campaign #houndsforhuntingtons. We shared the amazing letters of support Jackie had received from celebrities and members of the royal family that Jackie had sent Sybil’s to. Another fabulous volunteer, Trish Dainton, has produced a video of a complementary campaign #sybilontour and we showed this, showing Sybil’s adventures across the London Underground, visiting every station. Jackie then spoke, incredibly she had made 100 Sybil’s and some packs for people to take, and then post pictures, to raise awareness far and wide. The HDA then presented Jackie with an award, thanking her for her creative idea and all she has done.
There was a slight change of plans for the next speaker as Professor Roger Barker’s train had hit some cows on route and was stuck! Diana King, Specialist HD Adviser swapped and presented a very practical session about caring in HD. She stressed the importance of getting in touch with the HDA to access your SHDA. She pointed out the importance of discovering the right websites to look at and equipping yourself with knowledge about the disease, finding out about what services are in the local area, making plans for the future whilst the person has capacity, making sure medications are reviewed regularly, and the importance of looking after yourself. She also discussed regular respite breaks being important.
Professor Roger Barker’s train finally arrived and he spoke about how sleep is disrupted in HD and whilst the person may be asleep they are not entering the deep sleep needed to relax the brain and this can lead to symptoms that may mirror HD.
Our final speakers of the day were 2 members of team Wild, after an introduction from afar from Ed, Lauren Byrne and Filipe Brogueira Rodrigues gave us a summary of current research. Focussing on 4 out of the 15 ongoing trials, those being the Amaryllis study, Pride – HD, Legato – HD and finally sharing the good news that the first stage of the gene silencing trial has reported no detrimental effects to participants.
Saturday evening saw a Halloween themed party, and what a party it was. There were some amazing (and yes scary!) costumes, and a lot of fun had.
Sunday there were a series of workshops then all too soon it was time to go home.
Thank you to everyone attending for making it such an inspirational weekend.
HDA Chief Executive, Cath Stanley, reflects on this year’s HDA Family Weekend and AGM, held in Telford from 4 - 6 November.
Wow, what a weekend, it was amazing! The buzz in the air on Friday night as old friends and new met up for their annual catch up. We were treated to a performance from the youth theatre group that is part of Highly Sprung Performance. It was called when you wish upon a star. The story looked at a young person who is finding life difficult, for unspecified reasons, and chooses to make a wish on a star. Magically the star comes to life and the young person is taken on an inspiring journey through the sky. By the time they are returned to earth they have realised that all the strength they need to cope with difficulties can be found in the people around them. It was inspiring and a different sort of Ice breaker than we had experienced before.
Saturday dawned and more delegates arrived. It was so lovely to see so many families coming to enjoy the weekend. Andrew, our Chair gave a brief introduction to his background, explaining he is from a fundraising background and his mum had HD. He talked about his first family conference, and how scared he was, but how welcome and inspired he felt afterwards. I then gave a brief update as to what the HDA had been up to in the last year and some future plans. The highlights being that we have provided support, advice and guidance to 13,809 people living with HD, 95% of people felt the visit by their SHDA helped them. We are supporting 50 families affected by JHD, our telephone helpline dealt with 18, 000 calls, our branches, support groups, message board and social media feeds give the opportunity for peer support. We provided 414 training sessions to 4304 health professionals and ran 2 certificated three day courses and three conferences with key note speaker Jimmy Pollard. Raising awareness remains one of our biggest challenges so the long running storyline on BBC’s Casualty which had viewing figures in excess of 5 million per episode was a fabulous opportunity to get HD known outside of the HD community, in addition to this we had an advert in the financial times, launched a video appeal, had an article published and participated in several BBC radio 2 and 4 shows. I talked about plans for the future including our plans to make MP’s aware of the need to put pressure on the Department of Health to produce NICE guidelines and the fact we have received funding to look at developing a care home accreditation scheme.
Most importantly we took the opportunity to thank all of our amazing volunteers for everything they do to support us. Finally we took the opportunity to thank Jackie Harrison, Lynne Burgess and Brenda Wylie for their amazing endeavours with their fundraising campaign #houndsforhuntingtons. We shared the amazing letters of support Jackie had received from celebrities and members of the royal family that Jackie had sent Sybil’s to. Another fabulous volunteer, Trish Dainton, has produced a video of a complementary campaign #sybilontour and we showed this, showing Sybil’s adventures across the London Underground, visiting every station. Jackie then spoke, incredibly she had made 100 Sybil’s and some packs for people to take, and then post pictures, to raise awareness far and wide. The HDA then presented Jackie with an award, thanking her for her creative idea and all she has done.
There was a slight change of plans for the next speaker as Professor Roger Barker’s train had hit some cows on route and was stuck! Diana King, Specialist HD Adviser swapped and presented a very practical session about caring in HD. She stressed the importance of getting in touch with the HDA to access your SHDA. She pointed out the importance of discovering the right websites to look at and equipping yourself with knowledge about the disease, finding out about what services are in the local area, making plans for the future whilst the person has capacity, making sure medications are reviewed regularly, and the importance of looking after yourself. She also discussed regular respite breaks being important.
Professor Roger Barker’s train finally arrived and he spoke about how sleep is disrupted in HD and whilst the person may be asleep they are not entering the deep sleep needed to relax the brain and this can lead to symptoms that may mirror HD.
Our final speakers of the day were 2 members of team Wild, after an introduction from afar from Ed, Lauren Byrne and Filipe Brogueira Rodrigues gave us a summary of current research. Focussing on 4 out of the 15 ongoing trials, those being the Amaryllis study, Pride – HD, Legato – HD and finally sharing the good news that the first stage of the gene silencing trial has reported no detrimental effects to participants.
Saturday evening saw a Halloween themed party, and what a party it was. There were some amazing (and yes scary!) costumes, and a lot of fun had.
Sunday there were a series of workshops then all too soon it was time to go home.
Thank you to everyone attending for making it such an inspirational weekend.