Lord Fellowes visits St Mary’s hospital!

Lord Julian Fellowes visited St Mary’s hospital in Paddington on Thursday 5th July to see for himself the work done to date in the treatment for essential tremor and to learn more about the tremor lifeline appeal. Read the full story on NTF website by clicking this link.

Lord Fellowes has Essential Tremor himself and knows what it’s like to live with the disorder. In fact he finds it more and more difficult to write by hand these days.

Lord Fellowes St Mary's

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Surrey group meetup @ Denbies wine estate!

36768977_10156170415144087_2967733366863953920_n (2)Was great meeting up with fellow ETers today at Denbies wine estate  Dorking, Surrey.
2 had never met others before. although Denbies had laid on a wonderful large round table for us it was so hot we managed to find a secluded area in cafe which worked well. Setting up the table, out of the blue another customer saw the Spiral ET table logo came over and mentioned his mother has essential tremor!! He was surprised as he was there with a club having a coffee. A lot was gained from our group coffee/chat, exchanging stories, ideas and tips. Peters had ET all his life and heavily into diving. his tremors only affect taking underwater photos. Suggested he writes an article for all the diving clubs he belongs too as we think there could be others out there with ET. Jenny is setting up a support group in Towcester, Northants. It was a glorious day and of course England through to semi finals was added icing on the cake. I encourage you to talk out about your ET and spread the word in anyway that feels comfortable for you. It pays off just like that customer today who saw the spiral logo..

Spreading word of ET @ local park!

Saturday 30th June. Popped down to local park for their annual tea party and games. Found myself unexpectedly chatting to 2 Councillors. Lily (on left) had never heard of Essential Tremor after seeing me try to eat cake. Catherine (on right) explained her grandmother had ET and other family members too. Her grandmother was originally diagnosed with Parkinson’s and after 20yrs on that conditions medication turns out she didn’t have PD but instead Essential Tremor! We had good chat and both agreed to help raise ET awareness in local area. So the motto is I encourage you to go out, don’t hide your tremors but instead talk out about them. You never know you could just help spread the word.

Jackie Farrell (NTF support group coordinator) jackie@tremor.org.uk


Catherine whose grandmother has ET but misdiagnosed with Parkinsons!

Tremor Lifeline Appeal launch!

Thursday 21st June, Imperial Healthcare Charity launch TREMOR LIFELINE APPEAL

The National Tremor Foundation were delighted to be invited to the Imperial Health Charity launch of a £1.5 million fundraising campaign to help develop Guided Focused ultrasound surgery in UK for patients with essential tremor.

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L-R Dr Peter Bain neurologist & trustee of NTF, Ian Lush Chief Executive Imperial Healthcare Charity, Kevin Harfoot Chairman NTF, Jackie Farrell support group coordinator NTF, Professor Gedroyc Consultant Radiologist.

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Professor Gedroyc – Consultant Radiologist explaining about the focused ultrasound treatment along with Mel Gedroyc who opened the launch at St Mary’s hospital, London, UK 

 

Focused Ultrasound approved in UK!

Good news! The NHS regulator NICE approved Focused Ultrasound surgery as a treatment in UK 20th June.

Imperial Health Charity has launched TREMOR LIFELINE APPEAL.

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Support group meetup!

Denbies is one of the largest Wine estates in UK. Why not come along and join us for our meetup.

Denbies flyer July 2018

Congratulations Diane Peternel!


Congratulations and a huge well done to Diane Peternel for completing the Liverpool Rock n Roll half marathon 20/05/18. Diane has Essential Tremor and took part in this event to raise awareness of National Tremor Foundation and ET. We think Diane deserves to look happy on such an amazing achievement of raising Essential Tremor awareness and also supporting National Tremor Foundation.


London marathon 2018!!

Congratulations to Alan Corrigan on completing the London marathon 2018 in 05.09.46. Alan has Essential Tremor and took part in the London marathon. Alan entered to raise awareness of National Tremor Foundation who support people with Essential Tremor. It was very tough for him and the weather conditions made it even tougher which didn’t help his tremors. I take my hat off to all participants who took part in the grueling heat making it the hottest London marathon. If anyone wishes to donate to NTF in support of Alans achievement then please go to the virgingivingmoney  link which goes directly to NTF. The total has risen to an amazing £1839 including Gift Aid. It would be fantastic to reach £2000. All pounds count so if you can spare just the price of cup of coffee that would be would very much appreciated and welcomed to add to the total. Jackie NTF support group coordinator.

 

Successful ET information day at exhibition!

A very productive and busy day at Queen Elizabeth Foundation Kids disability exhibition, Carshalton, The National Tremor Foundation information table was busy with people keen to know about the disorder. They included Occupational therapists interested to know what to look out for regarding ET v PD. General public also stopped by including people who knew someone with Essential tremor. So a very worthwhile day.

Salisbury Shakers!

Great time had by the Salisbury shakers at their support group meeting 14th April. As well as social coffe and chat, Steve led some movement and mindfulness. After it was time for lunch. Yes, the group always follow their meeting with lunch!