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This Volunteers' Week we want to thank all of the amazing volunteers that give up their time to support us and our community.
From everyone here at the Huntington's Disease Association, we cannot thank our volunteers enough for dedicating their time to support us in such a wide variety of ways. From our wonderful fundraisers (who we will also be celebrating at our annual fundraising awards in July) to those that help shape the future of our charity by being on our HD Voice and HD Youth Voice panels. To all our volunteers who help to run our branches and support groups which act as a lifeline to so many. To our incredible ambassadors who bravely share their stories to help raise awareness and let others know they are not going through this alone and to all of the incredible people who are taking part in research and studies. We have a resilient community who are dedicated to helping each other. It's a community to be proud of. Thank you.
There are so many fantastic ways that you can be involved with the charity and the Huntington's disease community. It's a great way to meet others, share your story, help make change and it is also really rewarding.
How can you can get involved?
Branches and support groups
Huntington’s Disease Association branches and support groups are run by volunteers. Groups meet up and down the country for a mixture of social activities, information sessions, fundraising and a good chat. Branches have their own chair and treasurer, fundraise and run larger events whereas support groups meet up for informal chats throughout the year. If you can't see a support group in your area, please contact us and we can support you in setting one up.
HD Voice
HD Voice is an initiative by the Huntington’s Disease Association that gives families a voice in Huntington’s disease research and the internal work of the Huntington’s Disease Association. This could be anything from assisting us with in ternal projects to helping with requests from researchers across a variety of tasks such as commenting on a proposed piece of research, attending a focus group or reviewing patient information sheets. We believe that HD Voice enables, research and resources to be more relevant to the needs and concerns of the people that matter most.
Ambassador scheme
Huntington's disease ambassadors are community members who work with us to help raise awareness by public speaking, talking to the press and media writing blogs and recording videos, and providing valuable assets for campaigns such as awareness month.
We are not recruiting for more ambassadors at the moment but once we do, we will share this announcement on our social media channels.
Fundraising
Most of our funding that is used for the important work that we do comes from fundraising. We couldn't support as many people as we do without the hard work and dedication of our fundraisers. Our community of fundraisers complete a wide range of activities and challenges from bake sales, bike rides, charity balls, running events, mountain climbing, skydiving, you name it, our fundraisers have done it!
Taking part in studies and research
Studies and research are really important, not only to help find future treatments and but to help make the lives of those currently living with the condition better.
Studies
Studies come in many forms and some event offer compensation such as vouchers, money or gadgets. Some may require you to speak to them about your experience, others may require meetings with medical professionals or taking part in focus groups, some will simply be a questionnaire. The more people that take part in these studies, the clearer the results will be which will help researchers with the outcome of their study. You can find all recruiting studies on the link below and also join the mailing list where you will receive recruiting studies to your inbox as well as up to date research news.
Research
If you want to see what clinical trials are available if you wish to take part in clinical trials, you can finds out what trials are taking place and where they are recruiting on the National Institute of Health website.
Enroll-HD
Enroll-HD is a nation-wide study that collects a comprehensive and extremely valuable database of information that is available for use by Huntington's researchers worldwide. Enroll-HD will also be used for identifying which volunteers may be suitable for forthcoming treatment trials.