UK Group Leads Community-building Charge for Huntington’s Disease Awareness Week

Ana de Barros, PhD avatar

by Ana de Barros, PhD |

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Awareness Week

For Huntington’s Disease Awareness Week, the Huntington’s Disease Association in the U.K. has a few suggestions for ways to bring the community together and educate others.

Because Huntington’s is a rare disease, few are fully aware of its symptoms and signs. Advocates want to use occasions such as this to educate the public and create bonds within the patient community.

The association, also called HDA and based in Liverpool, prepared an information pack that can be read and shared through social media channels and email.

The pack advocates four approaches:

One way to participate is to light up one’s home or workplace in pink and green. Requesting one of the group’s free #LightItUp4HD packs gives you one pink and one green battery-operated tea light and two paper candle bags. Requests can be made at [email protected].

Another way is by having a charity or organization join forces with HDA by lighting up buildings or landmarks for HD Awareness Week. This action works best if a building/landmark already has the ability to light up. Then, a person or a group can contact those responsible for the building, asking them to participate. The HDA can also be contacted to inform them about the event. Contacting local press and letting them know about the initiative is also a good way to spread the story in the community. People may also take pictures of the event and ask friends and family to join them.

There are ways to help raise awareness and increase understanding of Huntington’s disease by sharing and posting useful information, graphics, and stories online, and by donating digital candles. Those in the community are in the best place to tell others about the disease and its effects, HDA says, showing their support for #HDAwarenessWeek and/or sharing their own experiences. Photos and videos also help to create a more visual experience when telling others about Huntington’s.

These events can range from a bake sale at a workplace to one a small informative stall at a local hospital, community center or shopping mall. To publicize such an event this week, register the initiative with the HDA by email; the group can provide leaflets, balloons, and stickers.

On the day of the event, taking pictures and sharing them online using the #HDAwarenessWeek hashtag helps to spread awareness, the HDA notes on its webpage marking this week.