Rare Dementia Support adapts to our new world No images? Click here Rare Dementia Support adapts to a new worldOver the past five weeks the Direct Support Team at RDS has handled double the usual number of support calls about adjustment to isolation, hygiene maintenance, hospital admission, loss of day care services and essential activities. In response to the increased need, RDS has adapted its digital support platform and launched the resources listed below, with information for carers and people living with a rare dementia about how to stay safe and mentally healthy. It has increased phone and email support, set up additional online support group meetings, and facilitated member-to-member Zoom-based buddying to help carers and people living with a rare dementia cope with the current lockdown and physical distancing guidelines. The current situation has accelerated the need for practical resources that develop the ongoing dialogue with the RDS membership to continually improve the quality and nature of the support and peer-related activity that is offered. (Please click on the links below to be taken to the RDS website resources). Coronavirus related advice and support including short practical videos to help carers and people living with a rare dementia cope in isolation and an Emergency Kit for people living with a rare dementia have been created. In addition to the more general advice, the RDS Direct Support Team have also put together a document to provide advice and support to carers of people living with behavioural variant frontotemporal dementia (bvFTD) during times of isolation for Coronavirus (COVID-19) as they may face particular challenges. As a result of having to make the difficult decision to close the face-to-face meetings in London over April and May, the RDS team are in the process of moving all London based support groups online where possible. The recent Frontotemporal Dementia (FTD) Seminar and Posterior Cortical Atrophy (PCA) Support Group were both held online with around 100 attendees at both. These are now available to view on YouTube. The Direct Support Team are also setting up new online small group discussions facilitated by members of the RDS team. These are in addition to – not in place of – the larger support group meetings. The large support meetings will continue online for as long as people are not able to meet face-to-face together in London in the normal large numbers. The small group discussions are with both peers and professionals and work alongside the one-to-one advice available from the RDS Direct Support Team by phone or email. New developmentsIn line with the planned expansion of Rare Dementia Support, we're delighted to announce that three new posts have been put in place. This has been made possible with funding from The National Brain Appeal and Mercers' Charitable Trust. Catherine Ader has been recruited to Rare Dementia Support as communications manager and will be responsible for leading the delivery of communications and marketing for RDS. An education programme is being launched and RDS has recruited one of two education officers, Chris Hardy, who many of you will know from the support groups. The purpose of the programme is to fulfil the vision to be the leading UK provider of education and training about rare dementias. An Admiral Nurse is also currently being recruited for Rare Dementia Support. They will work alongside the Direct Support Team working with people with dementia, and their families: giving them one-to-one support, expert guidance and practical solutions. How do I help fundraise?#GivingTuesdayNow is a global day of giving and unity that takes place today, 5 May, as an emergency response to the unprecedented need caused by Covid-19. This new day is organised by GivingTuesday, and is being held in addition to the annually scheduled GivingTuesday event that will still take place on 1 December. For ideas about how to take part and fundraise for your favourite charity, click here and remember to tag @brainappeal and @raredementia on Twitter. The National Brain Appeal website has an inspiring list of virtual challenges and more inspiration for lockdown fundraising ideas - from #DeclutterAndDonate to virtual pub nights! A huge thank you to our latest virtual and not-so-virtual fundraisers. Sophie Leggett has shaved off 26.2cm of her hair in the #twopointsixchallenge as she was due to be running 26.2miles in the London Marathon on 26 April. She has raised an incredible £2,800 plus Gift Aid, smashing her original target of £2,620. You can visit Sophie's fundraising page and watch the video of her amazing transformation, and hear her talk openly and honestly about why she supports RDS. Brothers Matthew and Thomas McKenna have run 100 miles during April for the Dementia Research Fund and National Emergencies Trust Coronavirus Appeal as their family member is in a care home and can't visit him currently. They have done a wonderful job and raised over double their original target of £1,000! Congratulations and thank you. Finally, thank you to RDS's very own Claire Waddington and her flatmates for walking 5k as one of our first virtual fundraisers! Mission: AccomplishedIt seems like a very long time ago with what has unfolded since then across the world but on Rare Disease Day 29 February, we held our Mission: Possible Gala dinner and it was a great success. An incredible £110,000 was raised over the course of the evening from fantastic auction prizes to philanthropic pledges. We were delighted to be supported on the night by John and Nula Suchet and Richard Arnold. Wash Westmoreland (director of Still Alice), Michael Palin and David Baddiel made video messages of support for the evening which were played to our guests. Our heartfelt thanks go out to all our speakers who made such moving contributions to the evening:John Suchet, Prof Nick Fox, Prox Seb Crutch, Sophie Leggett and the Blatter family who also made a film for the evening. Thank you to all of you who placed a bid in the auction and a particular thank you to our inspiring committee who worked so hard to make the evening such a success. Thank you to Nick Frankel-Pollen, Caroline Blatter, TNBA trustee Caroline Church, Prof Nick Fox, Sally Watson, Michael and Avril Staunton and their family, Roberta McKee-Jackson and Judith Blechner - we really couldn't have done so well without you. The NationalThe spring/summer issue of our charity newspaper, The National is now available to read online here with cover star Prof Nick Fox, Director of the Dementia Research Centre. Don't miss more about Mission: Possible, some special words for Terry Jones and exciting news about our new capital appeal for the world's first Centre for Rare Dementia Support! The National Brain Appeal has committed to raise up to £7m to create the world's first centre of excellence for rarer dementias. The Rare Dementia Support Centre will exemplify how best to support those living with a rare dementia, though the involvement of it's members and visitors in research and will lead in the bespoke education of families, healthcare and other relevant professionals. The new centre has three key aims: For more events, personal stories and how you can get involved, please visit |