As we prepare for the next Huntington's disease awareness month, we have reflected on the impact that last year's campaign #HuntingtonsInMind has had.

 

Last year we targeted our audience to really focus attention on making noise to policy and decision-makers and educating health care professionals. 

 

Our plan

To create a campaign that allowed us to tell the stories of people living with Huntington's disease and highlight the impact on the mental health of the person affected, their carers, those at risk, and other family members. We wanted to create a space on our website where people could go for information, resources, events and support, as well as to keep up to date with the campaign.

The aim was to influence policy and decision-makers to help action the varied and lacking support for people with Huntington's disease and those needing mental health support caused by being directly or indirectly affected by Huntington's.

 

Our impact

• The #HuntingtonsInMind campaign was shared far and wide with the hashtag reaching over 1.8 million people. The landing page, which was a hub of information, resources and support signposting had almost 6,000 views during awareness month. Our social media channels had over 7000 people engaging with posts, and were seen by over 211 thousand people, an increase of 290% from the previous month which shows the reach of this campaign.

 

• To date, the three short films that were produced have been viewed almost 18,000 times and are growing on a daily basis.

 

• We gained a wide range of tv, print and online press for the campaign with an estimated reach of 100 million people which helped us to raise awareness across the country about Huntington's disease and the #HuntingtonsInMind campaign.

 

• Post-campaign, an Early Day Motion (EDM) was submitted from ourselves and Scottish Huntington's Association to Parliament to highlight the need for better support for the Huntington's community. This had more signatures from MPs across England and Scotland than any other EDM in 2022. That could not have been achieved if it wasn't for our community who wrote to their MPs asking for support. A special thanks to Hilary Benn who agreed to be our Huntington's champion and help us move things forward in Parliament.

 

• This Early Day Motion led to a debate being tabled in Westminster Hall. Another huge milestone for the Huntington's disease community and in this 90-minute debate, numerous points were raised and our Huntington's disease champion, Hilary Benn represented our community with such passion.

 

• Following the debate, multiple questions have been tabled, including MPs chasing answers from things raised in the debate. This is amazing to see how this positive ripple effect has had Huntington's disease in the forefront of many decision-makers for the first time in history. 

 

• During the campaign we were supported by rare disease charity, Medics4 Rare Diseases, a charity which aims to educate medical professionals in training on rare diseases in order to improve the patient experience. Since awareness month we have worked with them on a podcast to highlight the campaign and misconceptions of Huntington's disease from a medical perspective. 

 

• Medics4 Rare Diseases also put us forward to do two talks at the Royal Society of Medicine online conference on genetics. Our trustee Nayana Lahiri, Trustee and Consultant Clinical Geneticist spoke about the genetics of the disease and common misconceptions and Charlotte Conn, a Huntington's disease ambassador, spoke about her lived experience. 

 

• Following from this, Professor Ed Wild was invited to speak about Huntington's disease at the Medics4 Rare Diseases conference, Rare disease in everyday medicine. Huntington's disease is one of two rare diseases that are presenting at this event. 

 

• We have hosted two mental health training sessions for professionals with over 700 healthcare professional attendees.

 

What the future holds

We will keep campaigning.

We will keep pushing for a baseline standard of care for everyone affected by Huntington's disease.

We will continue to push internal and external mental health support as part of the ongoing #HuntingtonsInMind campaign.