Campaigns in May hope to get people talking about Huntington’s
#LetsTalkAboutHD initiative in US and on social media for awareness month
Nonprofits around the world are hoping to “turn up the global volume” for Huntington’s Disease Awareness Month, an annual event in May to call attention to the disease, estimated to affect up to 7 per 100,000 people globally.
In the U.S., about 41,000 Americans are affected by the disease, with more than 200,000 estimated to be at risk of inheriting it.
The disease symptoms, such as uncontrolled movements, loss of cognitive ability, and psychiatric problems, typically start when people are in their 30s and 40s. However, in about 5%-10% of cases, symptoms appear before the age of 20, in which case patients are diagnosed with juvenile Huntington’s disease.
Social media initiative to share stories from patients and their families
During May, the Huntington’s Disease Society of America (HDSA) is launching #LetsTalkAboutHD, a social media initiative to encourage patients and their families to share their experiences with Huntington’s through videos, photos, or written stories. Participants are encouraged to use the #LetsTalkAboutHD hashtag on their social media posts.
“Help us turn up the global volume on [Huntington’s disease] awareness!” the nonprofit stated on its webpage. Huntington’s disease “impacts every family differently and it’s time the world knows our story.”
For those who do not use social media, stories can be sent via email to [email protected].
The campaign hopes to educate people about the impact of Huntington’s on affected families.
As part of the campaign, the society is offering a resource toolkit that includes key facts about Huntington’s, sample video scripts that families can use to record their brief video to support the campaign, as well as sample social media posts. There are also sample emails that can be used to request participation in the Awareness Month.
The HDSA is encouraging participants to create signs, frames, and boards for posting on social media, and to add a #LetsTalkAboutHD photo frame to their social media profile picture. There is also a promotional video about the campaign that can be viewed and shared.
The association will also share on its Facebook page and YouTube channel videos with celebrities raising awareness about the impact of Huntington’s as part of the campaign.
[Huntington’s disease] impacts every family differently and it’s time the world knows our story.
Buildings worldwide expected to be lit in blue for Light it Up 4 HD initiative
Similar to previous years, the Huntington Society of Canada is celebrating this awareness month with its Light it Up 4 HD initiative, wherein buildings across the country and worldwide are lit in blue for Huntington’s and purple for juvenile Huntington’s.
Last year, a record-breaking 250 sites from 13 countries participated, including Italy and India, which were new to the campaign. The campaign seeks to help fight the stigma of the disease and the discrimination of those affected.
The Huntington’s Disease Association in the U.K. is raising awareness about the effects of cognitive impairment on the quality of life for those with the disease and for their families in the #Mindful of Huntington’s campaign.
This year, the association created a short film in which a person with juvenile Huntington’s and another affected by Huntington’s share their views about how the disease has impacted their lives. The film includes interviews with Huntington’s specialists.
The association also invites people to attend two webinars dedicated to the subject and to make donations toward psychological support sessions for the Huntington’s community. The donations will be matched if made between May 15 and 22.
May 5 webinar on latest results from Phase 3 PROOF-HD clinical trial
Apart from the awareness month initiatives, the HDSA and the Huntington Society of Canada will host a research webinar on May 5, at 1 p.m. ET, to talk about the latest results of the Phase 3 PROOF-HD clinical trial (NCT04556656).
The study tested Prilenia Therapeutics’ experimental therapy pridopidine against a placebo in 499 adults with early-stage Huntington’s.
Recently announced findings showed that pridopidine failed to slow down Huntington’s progression relative to a placebo in the whole study population. However, there were some promising findings in the subgroup of patients who were not receiving medications to help manage certain disease symptoms.
Michael Hayden, MD, PhD, Prilenia’s CEO, and a lead principal investigator of the trial, will discuss the findings, and answer community questions during the webinar.