National Essential Tremor Awareness month celebrated by campaigners
Campaigners celebrated raising awareness of essential tremor for National Essential Tremor Awareness month this March.
National Essential Tremor Awareness (NETA) month saw the NTF hold seven online meetings attracting over 250 people to raise awareness, offer interesting discussions, friendly meetups and talks by speakers on essential tremor.
NETA month was opened by NTF Chairman Kevin Harfoot who said: ““This year marks the 10th year of National Essential Tremor Awareness month, and the sixth year of NTF involvement. Although this last year has been challenging for everyone thanks to the commitment of our supporters worldwide and our incredibly hard working team, this year’s awareness month has become the UK’s biggest yet.”
On 6 March NTF Founder and Trustee Professor Findley gave a fascinating talk on the history of NTF followed by a Q&A on tremors which attracted a full capacity of 100 people.
The 11 March saw the first meetup for parents of children with ET hosted by Kitty Reilly, NTF Childrens Liaison officer. We look forward to the next Children with ET event to be announced soon.
The Webinar on 18 March was another sell-out event with guest speakers including:
Hayrye Cagnan (Oxford University); Phill Alcock (British Nordic walking); James Blann (Insightect) and guests Professor Gedroyc (St Marys) and Karen Hull (Neuro-Physiotherapist); and Patrick McCartney (International Essential Tremor Foundation (USA)).
James Blann, InsighTec said: “What a wonderful NETA Month we have just had with many events taking place around the world – albeit virtually – to increase awareness of this debilitating and life-changing condition. It really is a misnomer in all ways to think that the original description was “benign” – it is anything but! I personally had the great pleasure of being able to take part in the NTF’s NETA Webinar on the 18th March via Zoom, and it was a total joy to be able to share “Geoff’s Journey” ) again, which tells the story of how he travelled from Leeds to London, to be treated by the team at St Mary’s Hospital with Focused Ultrasound to provide tremor relief for Geoff on his right side.“
“Being able to interview both Geoff, and Prof Gedroyc who leads the treating team was incredible, and a real insight into the effect that Focused Ultrasound can have on patients’ lives. And what a treat afterwards! To be able to talk with Karen Hull, a neuro-physiotherapist from Yorkshire, was a fantastic opportunity to hear and share how hand exercises and practiced movements can benefit people living with Essential Tremor. I for one am blown away by the incredible efforts of so many people to raise awareness of Essential Tremor. Well done to you all, and thank you again for the opportunity to take part.”
Phil Alcock said: “On 18th March I was very honoured to present a talk for the National Tremor Foundation’s Webinar. This was a very pleasant experience and the reception I received was truly inspiring. I'm so pleased to be of, at least, some help to those experiencing Essential or Orthostatic Tremor. The Webinar was faultlessly organised and managed.”
Patrick McCartney said: “Thanks for the opportunity to present at the National Tremor Foundation event in March to promote the 10th anniversary of Essential Tremor Awareness Month. We always appreciate the support in helping raise ET awareness and educate people about this disorder internationally.”
27th March saw NETA month come to a close with the Fundraising event ‘Dance and Singalong’ with Katy Barrow from SOSA dance and fitness guided us through fun moves. The event Raised over £220 and was a perfect end to a successful Awareness month.
Katy said: “It was my absolute pleasure to host this event to support National Essential Tremor Awareness Month to help raise funds and awareness for this health condition.” [LINK]
During the month campaigners put up posters and secured coverage in almost 10 newspapers and radio shows. Which shows how NTF supporters can really make a difference.
Between Coronation Street actor Rob Mallard and NETA Coordinator Jackie Farrell they raised awareness of the month and essential tremor by appearing on a number of radio shows.
Radio shows included: BBC Radio Newcastle; BBC Sussex and Surrey; BBC Radio Kent; BBC Radio Suffolk; BBC Radio Derby; BBC Radio Leeds; BBC Radio Manchester; BBC Radio Wiltshire; BBC Radio Shropshire; BBC Radio Somerset; BBC Radio London; BBC Radio Tees; Gateway FM; Wycombe Sounds; K107 (Edinburgh); Talk Radio; Riviera FM.
In addition Rob Mallard, Jackie Farrell and Katherine Phillips (Oxford) appeared on BBC South Today Oxford news.
The NTF appreciates Rob’s continued support and in raising awareness of essential tremor. Rob said: “I was very happy to take part in raising awareness around an issue that also affects me personally. Tremors can range from mild to debilitating and we want people to know that they’re not going through it alone.”
Jackie Farrell said: "It was a pleasure to coordinate and co-host the 2021 NETA month activities. The guest speakers truly gave plenty of great information and also encouraged our support group participants to become involved in raising awareness. Plus it was a delight to be part of the Radio interviews alongside Coronation Street actor Rob Mallard. Rob’s contributions are much appreciated, in particular reaching out to young adults with the disorder. A big thank you to everyone who was part of NETA month 2021 including our closing fun event Dance and Singalong with Katy. Here’s looking forward to March 2022!"
Testimonials from NETA campaigners
“A big thank you to Jackie and Duncan and all the other people in the background. I also learned a lot from the NTF's first webinar and enjoyed the variety of outline events throughout the month of March.” Support group member and campaigner David Murdoch who raised awareness in Northern Ireland.
"We just want to raise awareness of ET and the support groups/calls that are available for people. We want to try and help as many people as we can.” Sheila who raised awareness of essential tremor.
“Thank you very much Jackie and Duncan quite a marathon session - you held it together beautifully.” Phyl from Kent
“Thank you all very much for organising the webinar, and for getting the very interesting guests to join us. It was very well organised”
“I enjoyed the chance to ask some questions and hear about the latest developments.” Paul from Northants
“It was great to dance to raise awareness of our tremors and show you can still join in and have fun!” Lindsay from Herts
“I really enjoyed hearing and attending the Webinar. All the speakers were so interesting and varied. I am pleased that we are having repeat visits from them because in some cases I reached saturation point. I think I took lasting memories from many of them but especially Phil, but only because I already nordic walk. He reminded me that during lock down my poles had stood in the garage, unused. I now take them with me and feel so much better. I walk upright, faster and further getting a total upper body work out. Fortunately I hear that several of you have invested in poles and I hope you are also getting some extra benefits.
“In my small way I did try to make my friends aware of our organisation and used the interesting and fascinating facts that Jackie put on Facebook every day and put them on my Facebook storyline. They were viewed by roughly 20 - 23 people each time who were unrelated to our organisation. I'm hoping they found them as informative as I did. Some did comment!” Jilly from Dorset