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Familial Frontotemporal Dementia (fFTD) Support Group
- The familial frontotemporal dementia (fFTD) support group is for families affected by the rare autosomal dominantly inherited frontotemporal dementia, which runs in families and is caused by mutations in the tau, progranulin or C9ORF72 genes.
- You can download a flyer (pdf) about the fFTD support group.
- Please email our support group co-ordinator Jill Walton for more information: jill.walton@ucl.ac.uk (opens your email software).
Future Meetings
| 7th July, 2016 |
The venue for this meeting is the front Events Quadrangle Venue on the UCL Gower St site, WC1E 6BT (please see map for directions - opens new window). The meeting is scheduled from 11am -2pm, with coffee available from 10.30am and lunch provided. The theme of the meeting will be Medical –Legal Issues. We will be joined by James Mabey, a solicitor specialising in Private Client law and experienced in the preparation of Lasting Powers of Attorney and Advance Statements. He advises on all aspects of their use, benefits, registration and other issues that often arise.
James will give a presentation to help dispel some myths and outline the benefits of making these documents and the processes involved. |
Past Meetings
| 30th April 2016 | The theme of the support group meeting was: ‘I’ve been given a genetic diagnosis: what happens next?’ At this meeting we considered the information that is made available to you at the point when your family is given genetic results and how you begin to take that forward, incorporating more intimate discussion around the subject in smaller groups focussing on sharing the diagnosis, telling children, friends and partners |
| 18th November 2015 | We held a rare dementia carers' meeting where Dr Liz Sampson, a Senior Clinical Lecturer at the Marie Curie Palliative Care Research Department, Division of Psychiatry, University College London joined us to share her expert knowledge and facilitated a discussion on palliative and end of life care in dementia. |
| 25th April, 2015 |
A support group meeting took place at UCL. Speakers included Alastair Kent, Phil Cleverley, Tammaryn Lashley and Adrian Isaacs. |
Support Group Meeting Videos
Joint FAD and fFTD Support Group Meeting: 30th April 2016
We hosted a joint FAD and fFTD Support Group Meeting where Pat Sikes and Mel Hall discussed children and young people's perception of navigating parental dementia, Jon Rohrer discussed the implications of genetic testing, Jo Loxton generously gave a highly personal account of genetic testing and Alison Metcalfe discussed talking to children and young people about FAD/fFTD. Please see recordings and slides below - we apologise but the audio is slightly unclear at points so we have provided the slides alongside where necessary.
Please view their slides as a pdf.
Please view Alison's Metcalfe's slides as a pdf.
Joint Carers' Support Group Meeting 18th November, 2015
We held a Joint Carers' Meeting where Dr Liz Sampson who is a Senior Clinical Lecturer at the Marie Curie Palliative Care Research Department, Division of Psychiatry, University College London joined us to share her expert knowledge on palliative and end of life care in dementia.
Support Group Meeting 25th April 2015
Alastair Kent, the Chair of Rare Disease UK and Director of Genetic Alliance UK talked about the UK Strategy for Rare Diseases.
Phil Cleverley, Chairman of the Association of British Insurers Genetics Panel talked about Life Insurance and the use of genetic information.
Tammaryn Lashley talked about brain donation at Queen Square Brain Bank and what happens after donation.
Adrian Isaacs talked about research into genes that cause FTD.
Please note that you assume full responsibility and risk when attending support group meetings, and also in the use of the information contained on our website, in our newsletters and at support group meetings.