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Rare Dementia Support runs specialist support services for individuals living with, or affected by, one of five rare dementia diagnoses. Our vision is for all individuals with or at risk of one of these forms of dementia to have access to information, support and contact with others affected by similar conditions.

The five rarer forms of dementia that we support are:

familial Alzheimer’s disease (fAD)
frontotemporal dementia (FTD)
familial frontotemporal dementia (fFTD)
posterior cortical atrophy (PCA)
primary progressive aphasia (PPA)


FTD Support Group Meeting, London 

Thursday 28th September 2017

To mark World FTD Awareness Week (24th September – 1st October 2017), Rare Dementia Support will be hosting an ‘Evening of Music’ in London. This meeting is open to our FTD, PPA and fFTD Support Group members.

Time: 18:00 – 20:00, arrival from 17:30
Location: The Hub, 5th Floor, Wellcome Collection, 183 Euston Road, London NW1 2BE.

Music has a long connection with FTD, most famously in the case of the composer Maurice Ravel, who is likely to have suffered with a form of the disease. At the Dementia Research Centre we have conducted research over the last decade showing how music opens a window on the brain changes in FTD that would otherwise have remained closed to us. But above all, music matters a lot to a great many people with FTD (and other types of dementia) and the people who care for them.

In this Awareness Event we aim to acknowledge this and to say ‘thank you’ for all that you have taught and shown us over the years about music and FTD. Someone has said that music begins where words end but in the programme we are planning to have some of both. Our guest speakers represent the science of FTD, work with patients and living with the disease, standing together under the umbrella of music. We are most lucky to have a number of talented young musicians drawn from both the Dementia Research Centre and the Royal Academy of Music who have kindly agreed to come along and jam for us – and I think we can promise to cater for a range of musical tastes.

RSVP: To confirm your attendance, we kindly request that you contact Janette


Forthcoming London Support Group Meeting Dates

To allow us to make appropriate provisions, we kindly ask you to confirm your attendance at any of the meetings outlined below. To RSVP, please contact Janette.

We kindly ask all members to note that despite our best intentions, it may at times be necessary to change the dates of planned meetings. Therefore, we hope that the below acts as a guide helping you to pencil the dates into your diaries, but we will always give at least a month’s notice with the finalised dates.

2017

OCTOBER
PCA Support Group Meeting

Date: Friday 20th October 
Location: The Hub, 5th Floor, Wellcome Collection, 183 Euston Road, London NW1 2BE.
Time: 11:00 – 14:00, arrival from 10:30

NOVEMBER
Joint Carers Support Group Meeting
Date: Friday 3rd November
Location: 6th Floor, Wellcome Trust, Gibbs Building, 215 Euston Road, London NW1 2BE.
Time: 11:00 – 14:00, arrival from 10:30

Bereaved Carers Support Group Meeting
Date: Thursday 16th November
Location: The Hub, 5th Floor, Wellcome Collection, 183 Euston Road, London NW1 2BE.
Time: 10:30 – 12:30

DECEMBER 
PPA Support Group Meeting
Date: Friday 8th December
Location: The Hub, 5th Floor, Wellcome Collection, 183 Euston Road, London NW1 2BE.
Time: 12:00 – 15:00, arrival from 11:30 (please note the unusual timing for this meeting)

2018

JANUARY
FTD Support Group Meeting
Date: Wednesday 17th January
Location: The Hub, 5th Floor, Wellcome Collection, 183 Euston Road, London NW1 2BE.
Time: 11:00 – 14:00, arrival from 10:30

FEBRUARY
Bereaved Carers Support Group Meeting
Date: Thursday 8th February
Location: The Hub, 5th Floor, Wellcome Collection, 183 Euston Road, London NW1 2BE.
Time: 10:30 – 12:30

PCA Support Group Meeting
Date: Friday 23rd February
Location: The Hub, 5th Floor, Wellcome Collection, 183 Euston Road, London NW1 2BE.
Time: 11:00 – 14:00, arrival from 10:30

MARCH
FTD Annual Seminar 
Date: Friday 23rd March
Location: TBC
Time: 09:30 – 16:00, arrival from 09:00

APRIL
PPA Support Group Meeting
Date: Wednesday 11th April
Location: TBC
Time: 11:00 – 14:00, arrival from 10:30

Regional Facilitators Training Day
Date: Thursday 12th April
Location: The Hub, 5th Floor, Wellcome Collection, 183 Euston Road, London NW1 2BE.
Time: TBC

MAY
Joint Carers Support Group Meeting
Date: Wednesday 2nd May
Location: 6th Floor, Wellcome Trust, Gibbs Building, 215 Euston Road, London NW1 2BE.
Time: 11:00 – 14:00, arrival from 10:30

Annual fAD/ fFTD Support Group Meeting
Date: Saturday 19th May
Location: The Hub, 5th Floor, Wellcome Collection, 183 Euston Road, London NW1 2BE.
Time: 11:00 – 15:00, arrival from 10:30

JUNE
Bereaved Carers Support Group Meeting
Date: Thursday 7th June
Location: The Hub, 5th Floor, Wellcome Collection, 183 Euston Road, London NW1 2BE.
Time: 10:30 – 12:30

PCA Support Group Meeting
Date: Friday 22nd June
Location: 6th Floor, Wellcome Trust, Gibbs Building, 215 Euston Road, London NW1 2BE.
Time: 11:00 – 14:00, arrival from 10:30

JULY
Joint FTD and PPA Support Group Meeting
Date: Wednesday 18th July
Location: 6th Floor, Wellcome Trust, Gibbs Building, 215 Euston Road, London NW1 2BE.
Time: 11:00 – 14:00, arrival from 10:30

 


Contact Information

For information, support and advice about a rare dementia diagnosis (including regional support groups), please email Rachel.

For information about attending one of our London support group meetings, or to RSVP, please email Janette.

(past event details and forthcoming fundraising/meetings can be found here)



Disclaimer:
Please note that you assume full responsibility and risk in the use of information contained on our website, in our newsletters, at support group meetings and in subsequent correspondence. Our support group based correspondence is generic in nature and we are limited in our ability to offer specific advice via this means. We aim to ensure that all information is as accurate as possible but we accept no responsibility for any errors, omissions or inaccuracies, or for any adverse consequences of any kind arising from the use of support group based content. Our regional group facilitators are volunteers. They may refer to regional facilitator guidelines from RDS but are not governed by RDS. They operate independently and with best intention and you assume full responsibility for your contact and engagement with them and in the regional groups they facilitate. Please see the clinician responsible for your care, a social services representative, or your GP if you have specific needs which require attention. Any medical decisions should be taken in discussion with an appropriate health care professional. Rare Dementia Support is a fund held by The National Brain Appeal (registered charity number: 290173).