Ben Lake

As #AwarenessMonth comes to an end we're sharing what our Community wishes professionals knew about Huntington's disease

We are in Portcullins House today talking to MPs about improving care coordination for people living with Huntington’s disease #BehindTheGene

R to @HDA_tweeting: In a single moment, she realised her mother-in-law had it, her husband Tracy could have it, and their two-year-old daughter has a 50/50 chance of inheriting it. What happened next would define the next 25 years of her life. Read Susan's story below: https://tr.ee/mE7poM

"My heart stopped. Three generations in a flash, literally within that day." Susan was sitting with her mother-in-law at a routine doctor's appointment when she first heard the word Huntington's disease.

Well done to Harley for taking on this incredible challenge to raise money for us 👏👏

Today is the first day of Huntington's Disease Awareness Month, this year we will be going#BehindTheGene. Find out more https://www.hda.org.uk/huntingtons-disease-awareness-month-2026/

Want to take part in a research study? This study looks at how people with Huntington’s disease experience communication with professionals about assisted dying in the UK https://www.hda.org.uk/news/trigger-warning-research-study-conversations-about-death-and-dying/

In Westminster we met the Parliamentary Officer to Ben Lake MP to talk about improving support for people living with Huntington's in Ceredigion Preseli, with particular reference to access to mental health services. We look forward to working on follow-up activity in this regard

Thank you @MSCymru for inviting us to yesterday's Welsh Parliament election hustings. We were pleased to be able to ask about the actions the candidates would take to help ensure people with neurological conditions are able to access mental health services

Thank you Mabon ap Gwynfor MS @mabonapgwynfor for meeting us to discuss ways to improve access to mental health services for people with Huntington's in Dwyfor Meirionnydd and across Wales.

We were in Westminster to meet the Senior Parliamentary Assistant to Adam Jogee MP @AJogee to discuss care and support for people with Huntington's in Newcastle-under-Lyme. We are following up by asking Adam Jogee MP to table Written Parliamentary Questions to the government.

The Welsh Government has published its Quality Statement for Mental Health, which defines the outcomes and standards that mental health services must deliver. The Statement makes clear that people with Huntington’s shouldn't be excluded. Read more: https://www.hda.org.uk/news/an-update-to-welsh-mental-health-guidance/

We are going up! I just guided Hereford to 2nd place in Non-League C http://www.football-chairman.com [Free Edition]