Joined June 2013
- Tweets 15,038
- Following 5,923
- Followers 9,142
- Likes 8,280
Photos and videos
Clare Elman retweeted
23 Mar 2024
23 March is Huntington's disease Gratitude Day: the anniversary of the discovery of the Huntington's disease gene in 1993. Thank you to the Venezuelan families who made the gene discovery possible! #HDGratitudeDay24.
9
21
2,298
Clare Elman retweeted
18 Jan 2024
Behavioural changes in Huntington's disease are common, but why do they happen?
These changes can be caused by physical changes within the brain, however, they can also be due to the pressure of dealing with the disease.
Factors such as reduced independence, strained social life, poor mobility, lack of understanding from others and the effect of the disease could have on employment can naturally be a cause of stress.
While certain behavioural changes may be common, all experiences of Huntington's disease are different and unique.
Discovering what triggers specific behaviours may help when developing strategies. For more information on behaviour and communication, see our behaviour and communication guide.
2
4
1,506
24 Apr 2023
I got two, one around 3 one around 8. Clearly they know I would ignore the first one or have forgotten to charge my phone so needed a reminder
1,663
Clare Elman retweeted
With 91% of people saying the symptoms of Huntington's disease means they will use higher levels of energy in their home, we support @MartinSLewis in asking Chancellor @Jeremy_Hunt to postpone the government's 20% increase in energy bills on 1 April.
9 Feb 2023
I have just sent the Chancellor @Jeremy_Hunt - supported by major charities - a letter asking him to postpone the government's 20% increase in energy bills on 1 April.
The letter is at attached (plus supplementary explanation) please read and feel free to share
ALT  The Rt Hon Jeremy Hunt MP Chancellor of the Exchequer HM Treasury 1 Horse Guards Road London SW1A 2HQ CC: The Rt Hon Grant Shapps MP Thursday 9 February 2023 Dear Chancellor, In your November Autumn Statement, you announced a 20% increase of the energy price guarantee (EPG) – the state-subsidised energy rate – from April. This will increase energy bills yet again for almost every home across England, Scotland and Wales. This comes at the same time that the £400 energy bills support scheme comes to an end. Yet things have changed since then, and I would ask you to urgently consider postponing that increase. This cannot wait until the Budget – in practice, energy firms will need to know much sooner if the planned rise isn’t happening on 1 April, or they are bound to have to communicate to customers that it is coming. This decision to increase prices was made at a time when wholesale rates were looking to be far higher than they are now. In fact, on current
6
51
178
150,609
Clare Elman retweeted
This December we're featuring 2022 fundraisers to give you inspiration for 2023 fundraising. In June this year, Andi took on a 1000km bike ride across four days in the north of England. 🧵1/4
1
4
6
Clare Elman retweeted
So you can find things in one helpful place, we have put together a page on our website to share information about the cost of living increases. Read more: loom.ly/Cvxb_dY
3
5
Clare Elman retweeted
One of our streamers twilitphoenix is live streaming for #JingleJam2022, answering questions about Huntington's disease, playing games and raising essential funds to help our Huntington's Disease Association Youth Service. Go show her some support! twitch.tv/twilitpheonix
1
4
14 Oct 2022
Looking for streamers to be part of the amazing #JingleJam
14 Oct 2022
Calling all streamers!
We're delighted to have been chosen as one of the 12 charity partners this year to take part in @jinglejam ! We're looking for streamers to help us fundraise throughout this extremely popular event
Clare Elman retweeted
13 Oct 2022
#Halloween is spooky time of year, but joking aside it's truly scary for those with serious, life-altering conditions like Huntingdon's disease.
For everyone that replies with a pumpkin emoji 🎃 we will donate £1* to Huntingdon's Disease Association @HDA_tweeting
*Up to £200
99
14
31
Clare Elman retweeted
13 Oct 2022
Congratulations to Charles Sabine for his OBE award for raising awareness of #HuntingtonsDisease. Charles is a passionate advocate for raising awareness. He recently gave a talk to our community in our Family Voices series, a joint alliance between @ScottishHD @HDAI_ie @HDAssocNI
1
3
25
Clare Elman retweeted
13 Oct 2022
One of our AMAZING fundraisers, Jess, is on The One Show tonight! Well done Jess for all your amazing fundraising! @BBCTheOneShow #TeamHDA
2
12
Clare Elman retweeted
How adorable is this fundraiser?
This gorgeous pup joined Ruby, Lucy and their friends in their fundraiser in August. The fundraiser was part of their overall fundraiser for #TeamHDA which included Lucy running the #LondonMarathon this weekend.
Well done!!
1
2
7
2 Oct 2022
Loving all the photos from #TeamHDA today! #LondonMarathon2022
#TeamHDA having a great time cheering on our #LondonMarathon runners
14 Sep 2022
It’s 9am. I’m watching Mickey Mouse clubhouse. Donald Duck says “how exacerbating” my child does not understand… but I do.
1
Clare Elman retweeted
25 Jul 2022
🎲 Calling all gamers 🎮
This September we are joining the 'Gaming for Good' initiative with our brand new fundraiser - #HDAPlay. It's time to use the power of play to raise valuable funds to support people affected by #HuntingtonsDisease. Find out more: loom.ly/PWNbFEA
3
2
Clare Elman retweeted
22 Jul 2022
ME Research UK is pleased to an announce an open call for applications from researchers world-wide wishing to investigate the causes, consequences and treatment of ME/CFS. Full details - bit.ly/3cAiohZ #researchers #MECFS
7
71
167
22 Jul 2022
Fantastic cause and excited to see what @mariaeaglemp’s response will be. #HuntingtonsInMind #HuntingtonsDisease
20 Jul 2022
This year, we launched the #HuntingtonsInMind initiative to raise awareness of the mental health impact that a diagnosis of #HuntingtonsDisease has on patients and their families and the need for better mental health support. Get involved: loom.ly/46bKd_E
1
