Developing our Huntington’s Disease Association Ambassador programme.
Being an ambassador for the Huntington’s Disease Association means that I can share my story with the world. Hopefully with the life experience I have, I can pass on advice to the younger generations and those going through a similar situation as me.
Huntington's disease ambassadors are community members who work with us to help raise awareness by public speaking, talking to the press and media and providing valuable information for campaigns, including awareness month. The Ambassador programme was launched in 2023 and we have piloted the programme with a group of 44 proactive speakers and writers.
We were delighted to celebrate the work of the ambassadors by organising an event held in Birmingham. It was an opportunity to thank them for their support, listen to what they wanted from the programme and offer them some training.
The event was an ideal opportunity to discuss collaboratively the pros and cons of the programme so far. Then, looking at how we could develop it. We discussed how they want to be involved, the best way to communicate with them, and, in their words, “how we can best utilise them”. The day was also an opportunity to get their views on up and coming campaigns in line with one of our charity goals - ‘We will make sure the voices of people affected by Huntington’s are heard and at the heart of everything we do.’
One attendee said:
Being an ambassador to me, means I’m a part of an incredible team of people just as passionate about raising awareness and getting our voices heard to the wider community. I have been seen, heard and valued by all. The Huntington’s Disease Association has always helped me, so I believe this is me doing my part to thank them and return the favour. I will always strive to do my best, so that the world understands what Huntington’s is.
How did this event benefit our Ambassadors?
The programme has not just given them the opportunity to share their story, it has also evolved into a support group. This event then gave them the chance to meet each other in person which was really special.
The role to me is so important, I feel incredibly lucky to have been given the opportunity to meet others and have the support network that I now do,” says one attendee.
A survey was sent out after the event. Of those that completed it, when asked - ‘Overall, how would you rate the Ambassador event’, 100% of those that responded said it was extremely valuable.
Going forward
We took on board everything our ambassadors suggested and are working through developing the programme to adhere to the suggestions. These include:
- Supplying them with what they need to raise awareness in their area
- Sending media sheets with the welcome information to new ambassadors
- Introducing new ambassadors into the group and encouraging them to share who they are with the group
- If possible, a yearly event in order for the ambassadors to get together
It means a lot to be part of such a wonderful, inspiring group of people. It's an honour to represent the Huntington’s Disease Association.
Could you be an ambassador?
Being an ambassador is really rewarding and helps people to grow in confidence and use their stories to inspire others. We send media / speaking requests as well as requests from the Huntington's Disease Association. These requests could be, but are not limited to:
- Press and media requests
- Quotes or interviews with publications or researchers
- Speakers for conferences, lectures or talks
- Social media content such as videos or soundbites
- Sharing content for big campaigns such as awareness month, parliamentary news or surveys