Dementia Action Week – Frontotemporal Dementia

What is frontotemporal dementia?

 

Frontotemporal dementia (FTD) covers a wide range of different conditions. It is sometimes called Pick’s disease or frontal lobe dementia. This page explains what FTD is, its symptoms, and who gets it. It also describes how it is diagnosed and the treatment and support that is available.

The word ‘frontotemporal’ refers to the lobes of the brain that are damaged in this type of dementia. The frontal lobes of the brain, found behind the forehead, deal with behaviour, problem-solving, planning and the control of emotions. An area of usually the left frontal lobe also controls speech.

The temporal lobes – on either side of the brain – have several roles. The left temporal lobe usually deals with the meaning of words and the names of objects. The right temporal lobe is usually involved in recognising faces and familiar objects.

Frontotemporal dementia occurs when nerve cells in the frontal and/or temporal lobes of the brain die, and the pathways that connect the lobes change. Some of the chemical messengers that transmit signals between nerve cells are also lost. Over time, as more and more nerve cells die, the brain tissue in the frontal and temporal lobes shrinks.

When the frontal and/or temporal lobes are damaged in this way, this causes the symptoms of FTD. These include changes in personality and behaviour, and difficulties with language. These symptoms are different from the memory loss often associated with more common types of dementia, such as Alzheimer’s disease. As FTD is a less common form of dementia, many people (including some health professionals) may not have heard of it.

Frontotemporal dementia and younger people

Frontotemporal dementia is a significant cause of dementia in younger people – that is, those under the age of 65. Frontotemporal dementia is probably the third most common cause of dementia in this age group and some studies even place it second most common. It affects men and women roughly equally.

Frontotemporal dementia is most often diagnosed between the ages of 45 and 65. However, it can also affect people younger or older than this, and it is probably under-recognised in older people. Even so, this ‘peak age’ for FTD (the age at which it is most often diagnosed) is much younger than the age at which people are most often diagnosed with the more common types of dementia, such as Alzheimer’s disease.

Being diagnosed at a younger age is likely to present someone with a different set of challenges. They may still be working, have financial commitments or dependent children, and want different services and support.


Dementia Action Week 2019 – The 3 Nations Dementia Working Group – come talk to us at our Stand at the Alzheimer’s Society Conference 21 & 22 May 21019 – Become a Full or Associate Member, Talk About Life with Dementia

3NDWG1

The 3 Nations Dementia Working Group will have a stand at the Alzheimer’s Society Conference at the Kensington Oval, London on 21 and 22 May 2019.

Come and talk to us about Dementia and what we do, you may also wish to join as a Full or Associate Member, membership is free.


About the 3 Nations Dementia Working Group

The 3NDWG is a working group of people living with dementia across England, Northern Ireland and Wales. Members are based all across the three nations, creating a network of voices on dementia who can lead on regional projects.

A steering group of 12 people with dementia drawn from the membership will lead the 3NDWG.

We wish to contribute to:

  • Improving the lives of those living with dementia
  • Improving the lives of those who support and care for people with dementia
  • Help the work of professionals and policy makers working in this and related areas
  • To make a positive difference to the lives of people affected by dementia.
  • To become an advisory and the ‘go to’ group for professionals, the media, policy makers and anyone seeking input from people with dementia.
  • To reduce the prejudice and stigma attached to dementia.
  • To raise public awareness about the needs of people with dementia and their supporters and carers.
  • To be a collective voice of and for people with dementia nationally, regionally and locally.
  • To influence public policies that impact on the lives of people with dementia and their families.
  • To initiate and deliver specified projects for the benefit of people with dementia.
  • To advocate for all professionals working in the field to involve people with dementia in their work

We have been involved in activities such as:

  • Being approached for input on several consultation exercises such as the Green Paper on Health and Social Care and the Prime Minister’s Challenge on Dementia 2020
  • Asked to speak at several events, including the All-Party Parliamentary Group on Dementia, Dementia Friendly Communities and others
  • Delivering the opening session at the Alzheimer’s Society Annual Conference
  • Attending the Labour Party Conference to reach key MPs and other influencers
  • Heavily involved in the production of the new rights-based Dementia Statements and the Wales Dementia Action Plan 2018-2022
  • Providing a service user perspective to interview panels for key staff appointments within the Alzheimer’s Society
  • Building links to key organisations such as the DAA, NHS England, the Welsh Assembly, the Alzheimer’s Society
  • Delivering a presentation on the rights of people affected by dementia at Alzheimer’s Disease International conference in Chicago 2018
  • Attending the NHS Long Term Plan event, where we directly addressed the Secretary of State for Health and Social Care regarding dementia care
  • Sat on the judging panel for the Dementia Friendly Awards

Full Membership


Living With Dementia

We work to improve awareness of, and support for, people affected by dementia. Our members are people living with dementia at any stage of their journey.

Join us if you want to be part of our social movement and bring about change.

The services and support available to people living with dementia varies hugely across our three countries, and between counties and districts. The Three Nations Dementia Working Group is working to change this so that everyone gets good, timely and individual support and care.

 People living with dementia have a right to live as well as they can, as they choose. We campaign and influence to make this happen.

Our Campaigns

So we will…

  • Provide opportunities for members to discuss their concerns, ask questions, and share experiences.
  • Bring together examples of what works and what probably does not work.
  • Provide as much as information as we can about how health and social care are structured across the three nations.
  • Be able to advise individuals about organisations that, like ours, exist to campaign for change.
  • Host discussions of rights and the law.
  • Host a Twitter chat for anyone anywhere in the world to join.
  • Send a newsletter every two months to provide updates about our activities and campaigns.
  • Be holding webinars on specific subjects from time to time, which will be advertised on our website.
  • Get our members to every possible opportunity to make their voices heard, whether in one to one or larger meetings, or at conferences and other events.

You can join us here.


Associate Membership

Caring For Someone with Dementia

Care givers, paid and unpaid, are an immense and critically important resource, but are almost without exception undervalued.

 While membership of 3 Nations Dementia Working Group is for people living with a diagnosis of dementia, we are campaigning and working to improve the support and training provided to all care givers.

Unpaid care givers need regular opportunities to recharge their own batteries, and to look after their own health and wellbeing.

All care givers should be provided with good quality training to enable them to feel confident in their knowledge of the disease and its effects.

We urge all care givers therefore to encourage people living with dementia to join the 3 Nations Dementia Working Group in order to add to the weight of influence we can bring to bear for change.

Become a Member


Professional

We are the go-to group for professionals working in the field of dementia. We are a membership organisation of people living with dementia.

We can find speakers for training, events, and conferences, and people who are keen to help co-design and evaluate services.

We can provide:

  • guidance on how to involve people living with dementia in designing and evaluating services
  • experience based advice on influencing system leaders and government
  • expert knowledge of models of support and care from around the UK and abroad
  • real stories of people living with dementia
  • critques of your documents
  • And much more

Contact Us


Visit the 3 Nations Dementia Working Group website  here


The 3 Nations Dementia Working Group, Steering Group are a friendly group of people diagnosed with dementia who want to make a difference whilst we still can.


Who are we?

We are a small group with big ambitions and we hope to do the following:

  • Bring the lived experience as experts with our personal knowledge of dementia that people value whether in a professional or non-professional capacity. As such our aim is to become the ‘go to’ group within the three nations (of England, Northern Ireland and Wales) for anyone seeking input from people with dementia.
  • Continue to contribute to society, to give value, advice and information where required and requested.
  • Help each other through mutual support, friendship and understanding.
  • Help all those affected by dementia. We understand what you are dealing with.
  • Help those who are trying to help us (such as policy makers, service providers, academics, researchers, businesses).

Join the 3 Nations Dementia Working Group

If you too have a diagnosis of dementia, and live in England, Northern Ireland or Wales, why not join us?

You choose how active you would like to be. It may be you just want to hear what is going on or you may want to contribute to project work. You may be surprised at the difference you can make.

You can join us here.


 

 

Sunday Musings – 19 May 2019

Tomorrow is the start of Dementia Action Week 2019.

It used to be called Awareness Week but awareness is fine, take Dementia Friends which is an awareness session NOT training but what is needed now is action to bring the treatment of Dementia in line with other chronic terminal diseases.

It is no longer acceptable for a GP not to refer a patient with Dementia for treatment because it is “not appropriate” or “they don’t understand“.

I have met many professionals who are going out of their way to develop the skills necessary to communicate with people living with Dementia in their clinics because they recognise the benefit to the person, their family and the healthcare system.

The Alzheimers Society Conference is on Tuesday and Wednesday this week at the Oval in London, drop by the 3 Nations Dementia Working Group stand if you are there.


I started another research study on Friday but at the time of writing this article, I cannot remember anything about it, apart from that the researcher was supportive, maybe some of it will return in the future.


Alzheimer’s Disease International also have a survey running which you may wish to take part in, especially if you are a man as by Friday, only 18% of respondents were men.

ADI wants to hear what YOU think about Dementia!


Nominations for the National Diversity Awards 2019

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You can nominate here


Other Nominations

You can nominate here


Petitions

See dementia as a terminal illness so under 65’s are instantly eligible for PIP (9 Oct 19)

Petition – The lack of provision of social care in the UK is leading to immense distress for all people affected by dementia and their care partners.

Petition – Pay Carers an allowance equivalent to a fulltime job at the National Living wage

Petition – No more PIP Assessments for People with Life Long Disability or Conditions

Justice for Jodey Whiting. Independent inquiry into deaths linked to the DWP


Consultations

Consultation – Learning disability and autism training for health and care staff

Australian Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability

Investigating the impact of stigma on people living with dementia and carers: A questionnaire study PART 1

General Pharmaceutical Council – Consultation on guidance for pharmacist prescribers


Survey

Welcome to the Dementia 2020 Citizens’ Engagement Panel online Hub

Tell us your experience of living with Dementia

Sheffield CCG – Urgent Care Review 2019


Videos


Newsletters

Alzheimer Europe – April 2019

LEAD Coalition News – April 24 2019

Young Onset Dementia Alzheimer’s Group (YODA) – Newsletter No: 2


Blog

“My last post was a ranty one – hands up, it’s a fair cop.  I allow myself a ranty post on an annual basis and this was it (obviously, there is now absolutely zero chance of anything bad happening to mum this year that might warrant further ranting – because that’s how it works – phewf what a relief).

Mum Has Dementia’s blog titled Apologies – many Care Homes are clearly a FORCE FOR GOOD


New Resources

Young Dementia UK – A decision-making guide for GPs

Dementia words matter: A DEEP guideline on language about dementia

This Week on Dementia Diaries – 18 May 2019

Dementia Diaries is a UK-wide project that brings together people’s diverse experiences of living with dementia as a series of audio diaries. It serves as a public record and a personal archive that documents the views, reflections and day-to-day lives of people living with dementia, with the aim of prompting dialogue and changing attitudes.

Dementia Diaries Website

Who are we working with?

We are all part of the Dementia Engagement and Empowerment Project (DEEP). The Dementia Diaries initiative was designed by the non-profit communications agency On Our Radar (www.onourradar.org). It was launched by On Our Radar in January 2015 in partnership with Innovations in Dementia, Ownfone and Comic Relief, and was handed over to Innovations in Dementia in August 2016.

Phase 2 of the project is funded jointly by Comic Relief and BIG Lottery Fund.

A team from Leeds Beckett University was asked to evaluate the success of Dementia Diaries. A dementia-friendly summary of their findings is available here (pdf, opens in a new tab) or you can download the full report here (pdf, opens in a new tab).

The website provides the audio recording and a written transcript of each diary, you can volunteer to transcribe the audio diaries here


This weeks Diaries include:

JACQUI CAN’T RECOMMEND ‘I FEEL BETTER WHEN I PAINT’ ENOUGH.

CAROL CONGRATULATES RAE ON HER APPEARANCE ON TV

PAUL REPORTS FROM THE NORTHERN IRELAND DEEP GATHERING

STEPHEN IS HAPPY IF A BIT SORE AFTER HIS FIRST SESSION OF COPD REHAB.

JACQUI REPORTS ON A VISIT TO THE ARC CENTRE

RAE READS A NEW POEM

THE HAPPY TANDEMER REPORTS ON A JAUNT TO WHITBY

MELVYN HAS A SUGGESTION FOR INNOVATIONS IN DEMENTIA

WENDY READS A POEM WRITTEN FOR DEMENTIA DIARIES


Note for Professionals

You can use these Diaries as part of your Dementia Training.

As a courtesy, please email Rachel Niblock at Niblock@myid.org.uk to let her know that you will be using some of the Diaries, it helps when applying for funding in the future.

Dementia Action Week – Alzheimers Society Conference 21 & 22 May 2019

The Dementia Priority – Local and global action

Alzheimer’s Society’s vision is a world without dementia. Until the day we find a cure, we will create a society where those affected by dementia are supported and accepted, able to live in their community without fear or prejudice.

Globally every three seconds someone develops dementia and internationally it is recognised as a severe health crisis. We know that more research is being conducted than ever before, more collaboration on policy, and more support, awareness and community action – change is happening, but is it enough?

Our Annual conference will shine a light on the scale of the problem, but will focus on how our actions, our collaborations, policies, and the research we undertake as individuals, builds through partnerships to organisation, community and national change for people with dementia, their carers and families.

Building on our call to take action

Alzheimer’s Society Annual Conference 2019, takes place over two days at the start of Dementia Action Week (20-26 May) at the Kia Oval, London. We have worked with people affected by dementia, putting their voices and experience at the forefront of our work, to pull together a jam-packed programme.

For many a diagnosis of dementia can feel like the end of their life, leading to feelings of social isolation and loneliness. We live in a society with a support system that has not yet responded to the scale of the challenge dementia presents, meaning people with dementia also face greater inequity and lack of access to the appropriate and affordable care and support they need and deserve.

Research can help us understand more about the diseases that cause dementia and provide evidence for how best to support people affected, but without health and social care systems fit to use this research and meet the needs of people with dementia, we will not make the progress urgently needed in the UK and beyond.

Together we are changing the landscape of dementia forever, and our conference unites those personally and professionally affected by dementia to focus on the latest progress we are making and the challenges for the future.

Key themes

• Supporting People affected by dementia and their carers
• Building a movement for change
• Research to transform care and discover new treatments

Key speakers:

  • Caroline Dinenage MP, Minister of State for Health and Social Care
  • Professor Steve Powis, National Medical Director NHS England
  • Professor Dave Sharp, UK DRI Care and Technology Associate Director, Imperial College
  • Suzanne Cahill, Author and Professor of Social Work and Social Policy, Trinity College Dublin
  • John O’Brien, Professor of Old Age Psychiatry, University of Cambridge
  • Julie Ogley, Incoming President of Association of Directors of Adult Social Services

And many more …

What do conference delegates gain access to?

  • A jam packed two-day conference programme
  • People with dementia and carers sharing their experiences.
  • Over 10 main conference sessions, each focused on a different aspect of dementia care, research and policy.
  • 16 parallel sessions covering the latest research updates and service improvements.
  • Over 80 expert speakers from across research, policy, care, government and community groups
  • Exhibition stands to show innovative products and services.
  • Our interactive conference App.
  • Over 100 posters showcasing pioneering work in the dementia field.
  • Panel discussions and audience Q and As.
  • CPD accreditation.
  • Networking opportunities – via our drinks reception and App networking too

Who should attend?

This is a must attend event for anyone working in health and social care, local and national government, policy and research including;

  • International and national dementia researchers/organisations
  • Alzheimer’s Society funded researchers
  • Central and local government
  • NHS and third sector organisations
  • Clinicians
  • Commissioners
  • Leading influencers in health and social care
  • Providers of community health services
  • Local authorities
  • Research Strategy Council & Grant Advisory Board members
  • Members of our Dementia Friendly Communities Programme
  • Representatives of Dementia Friendly businesses
  • Prime Minsters task and finish group
  • People affected by dementia
  • Research network volunteers
  • Dementia Champions

Programme – Day 1 – 21 May 2019

Time Title Speaker
 9am Registration, exhibition, posters and refreshments
 9.30am Welcome and housekeeping Richard Madeley, TV Presenter and Journalist
9.45am Stepping up national action on dementia Jeremy Hughes CBE, CEO, Alzheimer’s Society
10.00am United by experience, united against injustice, united in action Lesley Calvert, Dementia Voice Volunteer

Tutiette Thomas, Dementia Voice Volunteer

Angela Sandiford, Dementia Voice Volunteer

 

10.30am

Dementia and human rights  Suzanne Cahill, Author and Professor of Social Work & Social Policy, Trinity College Dublin
 11.00am Refreshments, exhibition, posters and networking
 11.30am Care Research & technology at the UK DRI: Improving lives today and tomorrow Professor Dave Sharp, UK DRI Associate Director, Care Research and technology at Imperial College London
 12.00pm Parallel Sessions:

  1. Care homes – more than just a home
  2. Improving diagnosis and support for people with young onset dementia
  3. United Against Dementia: working together to make communities dementia-friendly
  4. Breaking new knowledge in dementia; towards new diagnosis and treatment
 1.00pm Lunch – Exhibition, posters, refreshments and networking
 1.45pm Lunchtime drop-in sessions:

  • Oral posters
  • Global Dementia Friends
  • Innovation Game Storming
 2.30pm Parallel Sessions:

  1. Active lives in Dementia
  2. Dementia and Data – The Dementia Intelligence Network
  3. An overlooked majority – women and dementia can no longer be ignored
  4. From proving to improving: the involvement of people affected by dementia in research
3.40pm Exhibition, posters and refreshments
4.00pm Joining up health, social care and public health – developing  solutions for an older population living with dementia Sandy Sweet, Volunteer Ambassador, Alzheimer’s Society

Julie Ogley, President of ADASS

Caroline Dinenage MP, Minister of State for Health

and Social Care

Professor Steve Powis, National Medical Director NHS England

Richard Murray, CEO King’s Fund

Kathryn Smith, Chief Operating Officer, Alzheimer’s Society

 5.00pm Recap of the day and closing remarks Richard Madeley, TV Presenter and Journalist
 5.30pm Drinks reception and 40th Anniversary celebration

(supported by Surrey Cricket Club)

Morella  Kayman, Vice-President, Alzheimer’s SocietyDuncan Jones, Trustee, Alzheimer’s Society

Programme – Day 2 – 22 May 2019

Time Title Speaker
 9.00am Registration, exhibition, posters and refreshments
 9.20am Welcome and housekeeping Duncan Jones, Trustee, Alzheimer’s Society
9.30am Address by the Secretary of State for Health and Social Care Rt Hon Matt Hancock MP, Secretary of State for Health and Social Care
 9.50am Stepping up the global action on dementia  Lenny Shallcross, Executive Director, World Dementia Council

Fiona Carragher, Chief Policy and Research Officer, Alzheimer’s Society

 10.15am Working together to build inclusive communities Catherine Anderson, CEO , Jo Cox Loneliness Commission

Sally Copley,  Director of Policy, Campaigns & Partnerships, Alzheimer’s Society

Chloe Moffatt, Programme Manager, Girls Brigade Northern Ireland

Larry Gardiner, Steering Group member, 3 Nations Dementia Working Group

 11.00am Refreshments, exhibition, posters and networking
 11.30am Parallel Sessions:

  1. Caring for Family Carers
  2. Breaking new knowledge in dementia: towards new treatments
  3. Dementia Voice – coproduction and involvement of people with dementia
  4. Social Care – how do we break the gridlock?
 12.40pm Lunch, exhibition, posters and networking
 1.15pm Lunchtime drop-in sessions:

  • Oral posters
  • Ask the Doctor: How might Alzheimer’s disease be diagnosed and treated in the future?
  • Innovation Game Storming
2.00pm Welcome and introduction to the afternoon – Charlie Webster, Sports and Television Presenter
 2.05pm Dementia Connect  – support for everyone with a dementia diagnosis whenever they need it Helen Foster, Director of Operations, Alzheimer’s Society

Max Oosman, Community Mental Health Nurse Practitioner, Lancashire NHS Foundation

 2.35pm Parallel Sessions:

  1. Connection and expression through music and arts
  2. Personalised Care for Dementia, and the National launch of the Dementia Action Group
  3. Dementia Friendly Hospital Initiatives
  4. What are the potentials for everyday tech to support better dementia care?
 3.45pm Registration, exhibition, posters and refreshments
 4.05pm Brain Health and Preventing Dementia John O’Brien, Professor of Old Age Psychiatry, University of Cambridge
4.35pm Changing the dialogue on dementia John Middleton, Actor

Jane Moore, Journalist and TV presenter

Trish Powell, Executive Producer, CPL Productions

Nicci Gerrard, Observer columnist and author

5.15pm Recap of the day and closing remarks Jeremy Hughes CBE, CEO, Alzheimer’s Society

Charlie Webster, Sports and Television Presenter

5.25pm End of conference 

Next Month – Alzheimer’s Society – Cupcake Day – 13 June 2019

Sign up to Cupcake Day

It’s time to dust off your bowls and whip out your whisks – Cupcake Day is back! Whether you bake it or fake it, sign up today and we’ll send you out a free fundraising kit.

 

Sign up today

Cupcake day

Hosting your Cupcake Day

  1. Sign up and receive your free fundraising kit in the post.
  2. Simply decide when and where to host your Cupcake Day. Cupcake Day is 13 June 2019, but you can host yours on any day that suits you!
  3. Start baking and/or buying delicious treats for your day (yes, faking is definitely allowed!) and raise as much dough as possible to help beat dementia.

What’s in your fundraising kit?

  • Posters to help you spread the word
  • Fundraising ideas and fun games to play on the day
  • A donation box and Gift Aid form (for the all-important ‘dough’)
  • Cake toppers and decorations
  • A selfie-frame to share your creations on social media
cupcake kit

How you’re baking a difference

In the average time it takes to bake a batch of cakes, six people in the UK will develop dementia. It is now the leading cause of death in England and Wales, overtaking both cancer and heart disease.

Your Cupcake Day can help to fund pioneering research, crucial support services and vital care. By hosting your day, you are uniting with us in the fight against the UK’s biggest killer.

Until the day we find a cure, because of Cupcakers like you, Alzheimer’s Society can continue to be here for anyone affected by dementia – wherever they are, whatever they’re going through.

Cupcake Day has raised £2.7 million since 2016 – let’s make this year our biggest yet!

Cupcake Day Website

Young Dementia Network – Research Event – Sheffield – 24 June 2019

Research Event

The Young Dementia Network would like to invite you to their second research event.

This event will provide an opportunity for people living with, or affected by, young onset dementia to connect with researchers and student researchers currently researching in the field of young onset dementia.

The focus of the day follows on from the research event we held last year where six topics for further research emerged. Young Dementia Network members have chosen three priorities

• Employment

• Health and social care education

• Family interventions (including children and young people)

We hope to secure funding to make this event free to attend but may have to charge up to £11 per person.

Monday 24 June 10.30am-4.00pm

Who will be attending:

•      People living with young onset dementia 

•      Family members and carers

•      Experienced researchers

•      Early career researchers

•      Junior researchers

Promote young onset dementia research

Consider three areas for further research

Develop partnerships and collaborations 

Venue:

The Diamond

University of Sheffield

32 Ladygreave Road

Sheffield

S3 7RD

Places are strictly limited.

Please RSVP to express your interest in attending by Friday 31 May 2019 including any dietary requirements in your email. network@youngdementiauk.org

If you are a researcher and would like to present a poster that is relevant to young onset dementia, please let us know via email.

Poster presentations are limited to a maximum of 10.

This event is supported by:

University of Bradford

University of Nottingham

Young Dementia UK

 

ADI wants to hear what YOU think about Dementia! by 14 June 2019

ADI wants to hear what YOU think about Dementia!

Alzheimer’s Disease International (ADI) has commissioned the London School of Economics and Political Science (LSE) to help conduct the world’s largest survey on people’s attitudes to Dementia. The results will form the basis of their World Alzheimer Report 2019.
ADI need more men to take part, by 10 May 2019 only 18% of completed surveys were by men.
The survey is now available in 25 languages with more to be added.

The survey will be available from:

15 April to 14 June 2019

The survey will only take around 10 minutes to complete and will be available in multiple languages. Please note that we will be adding more languages over the next two weeks. It will be predominantly multiple choice, accessible – available both online and offline – and is fully anonymous.

Please encourage the men out there to take part as the last I heard only 20% of respondents were men.

ADI wants to hear from:
  • The general public
  • Health and care professionals
  • People living with Dementia
  • Carers of people living with Dementia

Please visit www.alz.co.uk/research/world-report-2019 if you are interested in taking part and share the link far and wide!

The survey will only take 10 minutes of your time but completing it will benefit people living with dementia and the families all over the world.

This is the most important dementia-related survey that you will do this year.


If you know any groups or organisations who will promote the survey please email j.mcgowan@alz.co.uk for a toolkit, including social media assets and draft messages.


Thank you for your support, 

The ADI team