HDSA Launches Social Media Effort for Huntington’s Awareness Month

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by Mary Chapman |

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Some 41,000 U.S. residents are thought to live with Huntington’s disease (HD), a rare progressive disorder that breaks down brain nerve cells. During May, and as part of Huntington’s Disease Awareness Month, the Huntington’s Disease Society of America (HDSA) is launching a robust social media initiative aimed at educating people about the impact Huntington’s has on patients and their families.

Called #LetsTalkAboutHD, the campaign encourages families to share their experiences through videos, photos, or a written narrative. Those who who do not have social media platforms but would like to share their story should send it via an email to Matthew Santamaria at [email protected].

Observed annually, Huntington’s Disease Awareness Month seeks to heighten awareness among policymakers, public authorities, industry representatives, researchers, health professionals, and the general public.

The organization’s goals this year are to build disease awareness, engage people who are outside the Huntington’s community, and promote involvement with HDSA.

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As part of the campaign, the society is offering a resource toolkit and will feature “31 Days, 31 Stories“ each day in May about the Huntington’s experience.

The Awareness Day toolkit includes shareable facts about Huntington’s disease, which the organization describes as being like having amyotrophic lateral sclerosis, Parkinson’s disease, and Alzheimer’s disease simultaneously.

The toolkit also includes sample scripts that families and caregivers can use when recording their brief videos to support the campaign, as well as sample media posts. In addition, there are sample emails that can be used for soliciting Awareness Day participation.

The HDSA is encouraging participants to create signs, frames, and boards for posting on social media, using the hashtag #LetsTalkAboutHD. There’s also a downloadable social media profile photo frame available in the toolkit and a promotional video about the initiative that can be viewed and shared.

On May 14, the HDSA will square off against the Huntington Society of Canada in the inaugural Huntington’s Disease Hockey Classic that will feature former professional and collegiate players, including Stanley Cup champion and Huntington’s advocate Jake Dowell. The game will be held at the RWJBarnabas Health Hockey House in Newark, New Jersey, where the three-time Stanley Cup New Jersey Devils play and will be live-streamed for free on the HDSA YouTube channel.

The Huntington Society of Canada is marking the month with a Light it Up 4 HD effort wherein landmarks and other structures across the country will be awash in purple, the official color for Huntington’s. Last year, the effort was joined by Spain, Ireland, Germany, the United States, Cyprus, and Australia.

The organization calls its LightItUp4HD campaign an effort to overturn years of “stigma and discrimination” that families who had to keep an HD diagnosis secret faced. “The #LightItUp4HD campaign is a wonderful opportunity for those with HD to raise awareness, make connections, receive support from their communities, and move forward with pride and dignity,” it relays on its webpage.

The organization will also present its Huntington Heroes National Virtual Walk fundraiser in May. Go here to find a local event.