Huntington's disease Community Conference and AGM 2024
Join us to hear from well-renowned speakers and connect with and learn from other members of the Huntington's community.
Date and time
Location
Crewe Hall Hotel & Spa
Weston Road Haslington CW1 6UZ United KingdomRefund Policy
Agenda
10:00 AM - 4:30 PM
Saturday 26 October (daytime agenda)
10:00 AM - 11:30 AM
Registration
11:30 AM - 12:15 PM
Annual General Meeting 2024
Professor Hugh Rickards, Chair of the Board of Trustees
Nick Heath, Treasurer
Cath Stanley, Chief Executive
12:15 PM - 1:15 PM
Lunch
1:15 PM - 2:15 PM
Research update: a light at the end of the tunnel
Professor Ed Wild, Consultant Neurologist
2:15 PM - 2:45 PM
Research Lightening Talks
Dr Sarah Gunn, Clinical Psychologist, plus guests
2:45 PM - 3:15 PM
Break
3:15 PM - 3:45 PM
A personal perspective on living with Huntington's
Chris Leak, HD Ambassador
3:45 PM - 4:15 PM
Practical tips for managing symptoms of Huntington’s disease
Rachel Taylor, Consultant Nurse
4:15 PM - 4:30 PM
Summary and close
Professor Hugh Rickards, Chair of the Board of Trustees
About this event
- Event lasts 1 day 4 hours
For our 2024 annual Huntington's disease Community Conference and AGM we are delighted to be returning to an in-person event! We can't wait to see you all.
What's on?
Saturday 26 October 2024
We will be joined by a number of well-renowned speakers in the Huntington's community, with extensive knowledge of care, support, and research including:
- Cath Stanley, Chief Executive of the Huntington's Disease Association with an overview of 2023/2024 for the charity.
- Professor Hugh Rickards, Neuropsychiatrist and Chair of the Huntington's Disease Association talking about future plans for the charity and leading the Annual General Meeting*, which includes the appointment of trustees, auditors, and a financial update by our Treasurer, Nick Heath.
- Chris Leak, HD Ambassador - A personal perspective on living with Huntington's disease.
- Professor Ed Wild, Professor of Neurology at UCL, Associate Director of UCL Huntington's Disease Centre, and a Consultant Neurologist at the National Hospital for Neurology and Neurosurgery, providing an update on current and proposed research trials for Huntington's disease.
Children and young people attending (up to 17 years) will have the option to join off-site activities with our Specialist Youth Engagement team. In previous years, these have included activities such as bowling, laser quest, escape rooms and theme parks.
In the evening, we will join together for a three course dinner and disco which will take place in Crewe Hall's spectacular Long Gallery which dates back to Jacobean times.
Sunday 27 October 2024
We will be running smaller more interactive workshops that you choose from. In previous years, these have included a range of topics such as relaxation techniques, reflexology, psychological strategies and preparing for the future.
Children and young people will join our Specialist Youth Workers for further activities on-site, in previous years, these have included swimming, film morning and arts and crafts.
Is this event for you?
This event is for everyone affected by Huntington’s disease, whether family, friends, individuals or professional to come together to understand more about the disease.
How to book
We have created a number of different ticket types in Eventbrite to help you to attend in a way that best suits you - whether that is for the full weekend or one day only.
You will be asked to provide room preferences and additional information, such as accessibility and dietary requirements, after you have selected your ticket types.
If the ticket types available do not meet your requirements (for example you also want travel and stay the night before) or you need any further support with your booking, please give us a call (0151 331 5444, press option 4 ) or email (info@hda.org.uk). Where possible, we will see if alternative requirements can be accommodated.
If you want to stay over on Friday night, we have negotiated a special rate with the hotel, please the reservations team at Crewe Hall on 03301071599. Let them know you are attending the Huntington's disease Community Conference and AGM to receive 20% off room prices. Please let us know via info@hda.org.uk if you have booked for the Friday evening. Although we cannot guarantee the same room on Saturday, we will do our best to accomodate this. Please note that the event begins on Saturday therefore there will be no charity presence or charity activites on the Friday evening.
Please take a look at the FAQ section below for further information.
We thank our sponsors for their contributions to make this event possible.
Sage Theraputics, Prilena, UniQure and Roche
*Formal notice of the Annual General Meeting can be found at www.hda.org.uk/about-us/agm-2024
For more information on what information we collect and how we use it when booking onto one of our events, please see our privacy policy on our website.
Frequently asked questions
Yes, there is free parking available at the hotel for anyone attending the event. There are a number of disabled parking spaces around the venue.
Crewe Hall a grade 1 listed building set in 8 acres of stunning scenery for guests to explore. The hotel has many amenities such as health club and spa, restaurant and bar.
The closest train station to the hotel is Crewe Station which is 2.2 miles away. There are a number of taxi services which can take you from the station to Crewe Hall including Carz4U - 01270 588888 (Offers accessible taxis) and Beeline - 01270 656461.
There are two airports located close to Crewe Hall. Liverpool Airport is 45 miles (approximately an hours drive) and Manchester Airport is 29 miles (approximately 40 minutes drive).
The hotel is centrally located and easily accessed via car. It is located off J16 M6.
If you want to stay over on Friday night, we have negotiated a special rate with the hotel, please call the reservations team at Crewe Hall on 03301071599. Let them know you are coming to our conference to receive 20% off room prices.
There are a number of accessible bedrooms at the hotel providing a range of facilities depending on individual needs.
Meeting rooms are located on the ground floor and first floor with accessible lifts. Disabled toilet facilities are available on both floors. Hearing loops are available upon request in advance. For more accessibility information, please visit: www.crewehallcheshire.co.uk/access-statement
We ask that you provide details of dietary requirements and adjustments when booking so that we can make the hotel aware and ensure these requests are suitably met.
Check-in is from 3pm and check-out is 11am, free left luggage is available. We would recommend bringing a form of ID should this be requested by the hotel staff at check in.
Infants requiring a cot are free of cost, if you require this within your booking. Please contact info@hda.org.uk directly, alternatively call us on 0151 331 5444 (option 4) and inform us of this request.
Yes, we will be selling a range of charity branded merchandise including Christmas cards as well as a number of popular Huntington's focused publications.
Treatments can be booked directly with Crewe Hall spa. We recommend booking this at least two weeks in advance as this facility is popular. Hotel guests will receive a discount. Please visit: www.crewehallcheshire.co.uk/spa
Yes of course, we realise not everyone likes booking via the internet. Please call 0151 331 5444 and press option 4 to speak to our Operations Team who can assist with your booking over the phone.
Yes of course. Please either call 0151 331 5444 option 4 or email info@hda.org.uk and request a form to be sent to you.
Organised by
The Huntington's Disease Association is the only charity in England and Wales dedicated to providing information, advice and help to those affected by Huntington's disease. We enable everyone affected by Huntington's disease to live life to their full potential by improving care and support, educating families and the professionals who work with them, championing the needs of the Huntington's community and influencing decision makers.
We offer a wide range of events throughout the year from fundraising challenges to peer support and information sharing sessions.