Family weekend and AGM 2018
Thank you to everyone that joined us for our annual family weekend (and AGM) on Friday 12 October – Saturday 14 October 2018.
The Radisson Blu Hotel at East Midlands Airport provided a fantastic venue for attendees to find out about support, care and research and meet others affected by Huntington’s.
Our first key note speaker, Harry-Jon Morgan gave an emotional and inspirational account of his family’s experience with Huntington’s and Juvenile Huntington’s. A brave story of a family’s remarkable resilience in difficult times.
Chief Executive Cath Stanley and Chair Andrew Bickerdike, updated attendees on the work of the Huntington’s Disease Association and officially launched the Association’s new five year strategy.
Our formal annual general meeting (AGM) saw Steve Duckett appointed as a new trustee for the HDA and Christine Clarke, Nicholas Heath and Hugh Rickards reappointed as board members for a further three year term of office.
Throughout the weekend, attendees were able to attend a number of workshops including advice on aids and adaptations from Occupational Therapist, Alex Fisher, relaxation techniques from SHDA Poppy Hill, talking to children about Huntington’s from HDYO Founder Matthew Ellison, coping with challenging behaviour from Professor Hugh Rickards, genetics and Huntington’s from Dr Alan Fryer and insights from the EHDN. This smaller, more informal set up, gave people more opportunity to share their experiences and gain advice specific to their individual circumstances.
Between talks and workshops, there was opportunity to chat, browse merchandise and sponsor stands. A huge thank you to our sponsors:
- Exemplar healthcare
- St Andrews
- Elysium Healthcare
- Healthcare Matters
- PJ Care
Our second key note speaker, Professor Anne Rosser provided an invaluable insight into Huntington’s research and the recent developments made, as well as information about trials that are currently in progress and the studies that are expected in the near future.
We were incredibly lucky to be able to show an advance screening of the short film, ‘Dancing at the Vatican’ by HDden no more which follows the story of the South American families affected by Huntington’s that inspired an audience with Pope Francis.
The young people that attended the weekend took part in an escape room challenge, fought off opponents in a game of laser quest and enjoyed a movie morning.
A number of branch and support group members were able to meet during the weekend in the first of the planned consultation meetings to discuss the HDA’s branch and support group model, what works well currently and what can be improved to look at ways this can be developed.
Both Friday and Saturday’s evenings ended with a three course sit down meal and after dinner entertainment – a marshmallow challenge on Friday and a country and western themed disco on Saturday. Congratulations to David Nicol and Scarlette Orme who won best costume and baby Joey Ellison who won best littlest cowboy costume!
Please do take a look at the photos above from another fantastic annual family weekend.
Thank you to everyone that joined us for our annual family weekend (and AGM) on Friday 12 October – Saturday 14 October 2018.
The Radisson Blu Hotel at East Midlands Airport provided a fantastic venue for attendees to find out about support, care and research and meet others affected by Huntington’s.
Our first key note speaker, Harry-Jon Morgan gave an emotional and inspirational account of his family’s experience with Huntington’s and Juvenile Huntington’s. A brave story of a family’s remarkable resilience in difficult times.
Chief Executive Cath Stanley and Chair Andrew Bickerdike, updated attendees on the work of the Huntington’s Disease Association and officially launched the Association’s new five year strategy.
Our formal annual general meeting (AGM) saw Steve Duckett appointed as a new trustee for the HDA and Christine Clarke, Nicholas Heath and Hugh Rickards reappointed as board members for a further three year term of office.
Throughout the weekend, attendees were able to attend a number of workshops including advice on aids and adaptations from Occupational Therapist, Alex Fisher, relaxation techniques from SHDA Poppy Hill, talking to children about Huntington’s from HDYO Founder Matthew Ellison, coping with challenging behaviour from Professor Hugh Rickards, genetics and Huntington’s from Dr Alan Fryer and insights from the EHDN. This smaller, more informal set up, gave people more opportunity to share their experiences and gain advice specific to their individual circumstances.
Between talks and workshops, there was opportunity to chat, browse merchandise and sponsor stands. A huge thank you to our sponsors:
- Exemplar healthcare
- St Andrews
- Elysium Healthcare
- Healthcare Matters
- PJ Care
Our second key note speaker, Professor Anne Rosser provided an invaluable insight into Huntington’s research and the recent developments made, as well as information about trials that are currently in progress and the studies that are expected in the near future.
We were incredibly lucky to be able to show an advance screening of the short film, ‘Dancing at the Vatican’ by HDden no more which follows the story of the South American families affected by Huntington’s that inspired an audience with Pope Francis.
The young people that attended the weekend took part in an escape room challenge, fought off opponents in a game of laser quest and enjoyed a movie morning.
A number of branch and support group members were able to meet during the weekend in the first of the planned consultation meetings to discuss the HDA’s branch and support group model, what works well currently and what can be improved to look at ways this can be developed.
Both Friday and Saturday’s evenings ended with a three course sit down meal and after dinner entertainment – a marshmallow challenge on Friday and a country and western themed disco on Saturday. Congratulations to David Nicol and Scarlette Orme who won best costume and baby Joey Ellison who won best littlest cowboy costume!
Please do take a look at the photos above from another fantastic annual family weekend.