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RDS Fund Newsletter #1
A new fund is born

Thank you to everyone who joined us on Leap Day last week for  the launch of the new fund to help people affected by rare dementia. And thank you for all support to date - this fund brings together the previously existing FTD Support Group Fund and the Myrtle Ellis Fund.

Delivering the existing Rare Dementia Support service costs more than £35,000 annually and it is no exaggeration to say that we really couldn’t do this without you. The service is entirely funded by donors and supporters and our aim is to extend this service by raising over £100,000 each year.

Our vision

We want all individuals with − or at risk of − a rare form of dementia to have access to specialist information, support and contact with others affected by similar conditions. Goals for the coming year include:

  • Establishing six new regional venues across the UK for support group meetings
  • Hosting additional meetings for people who are newly diagnosed with a rare dementia
  • Forming a 'young adult carers’ group and a ‘bereavement group’, in addition to the group meetings that are currently provided
  • Creating a sixth disease-specific group for people affected by Lewy Body disease and the symptoms typically connected to that diagnosis.
How you can help

1. Make a donation

  • Text RDSF84 followed by the amount you would like to donate (we suggest £5) to 70070
  • By cheque or bank transfer (email for more info)

2. Encourage donations from family, friends and colleagues

  • You can also link to the campaign page if you set up your own Justgiving page for a challenge, event or in memory of and this ensures that all donations go directly to Rare Dementia Support.

3. Take on a challenge

  • We have guaranteed places for challenge events throughout the year. There's more information here on how to sign up or apply for a place
  • If you've entered a different event of your own choice or designed your own challenge, email to get a fundraising pack and sports vest.
  • Many challenges can be found at or We are partners with both − search for us on either site and we’ll automatically know to send you a fundraising pack. Be sure to let us know that you are specifically fundraising for Rare Dementia Support .

4. Organise your own event

  • If you fancy hosting an event, we suggest creating something based on your interests or hobbies – a keen baker could have a cake sale or afternoon tea; or a sports fanatic might host a golf day or football tournament.
  • If you’d like to get involved but don’t know where to start, get in touch and we’ll send you a  pack with lots of top tips. Justgiving also has a great A-Z of fundraising ideas.
  • Have fun with the 'rare' nature of what you're fundraising for − why not organise an unusual event or time it with a less common time of year, such as a Full Moon.
  • We can help with advice on logistics and publicising your event. Let us know and we can send you some safety and legal tips, and we like to promote big events such as concerts and quiz nights whenever we can.
This weekend...

The London Medical Orchestra is putting on a concert for Rare Dementia Support this weekend.

Join us at 6pm on Sunday 13 March at St Mary Brookfield Church, Dartmouth Park Hill, London NW5 1SL, for what it set to be a wonderful evening. The orchestra will be composed of more than 75 musicians and the programme includes Holst’s The Planets Suite.

Tickets cost £10 in advance or £12 on the door, with concession rates available. More info and buy tickets here.


For more events, personal stories and how you can get involved, please visit, or follow us on Twitter @brainappeal and Facebook at fb/TheNationalBrainAppeal

Theresa, Marcelle, Louise, Brooke, Laura, Cara, Leigh and Tina

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Rare Dementia Support is a fund held by The National Brain Appeal, which is the working name of The National Hospital Development Foundation. Registered Charity Number 290173. A limited company registered in England number 1844281
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