The difference a year makes

Today marks Rare Disease Day − and it seems hard to believe that a year ago on this day we were enjoying a wonderful evening with friends and hundreds of fellow supporters at our gala event Mission: Possible. Many of us at that point were wondering if we were heading into a lockdown, and now, 12 months on, we are looking with hope towards a way out of the pandemic.

The evening in aid of Rare Dementia Support (RDS) was a truly special event made even more wonderful because our mission that evening was accomplished. We raised an incredible £110,000.

The funds raised have been vital to RDS − this year more than ever − and enabled the development of the direct support team. The team have developed a range of services supporting RDS members as they negotiate the challenges and isolation caused by the pandemic.

Requests for support almost immediately doubled and the team moved all groups online, set up a Zoom Buddy network and conducted research into what was needed for both the short and long term.

"RDS has had a critical impact on managing  the challenges faced throughout Covid. Without the dedicated support team, many would feel lost and alone. It's helped me maintain my positive approach to life"   RDS Member

RDS are continuing to create a virtual centre and have seen membership grow more than 60% with 830 new members joining in 2020, 860 people attending online support groups and 45,171 visits to the website from 142 different countries! Current plans include an online members’ forum, the establishment of two new support groups for Young Onset Alzheimer's Group and a Young Adult Children’s group.

This virtual centre is being developed alongside the physical centre − which will be the world’s first Centre for Rare Dementias. The centre will be a leader in how best to support those living with a rare dementia diagnosis. Its aims are: 1) To empower people living with rare dementias and their families by having a dedicated space to host regular support group meetings and facilities to live stream; 2) To educate and train professionals − such as speech therapists, nurses, physiotherapists, opticians and GPs − who work with people with a diagnosis; and 3) To research the impact of support services on those with a rare form of dementia. All donations to RDS will support both the support services and the development of the centre. 

Alongside our dedicated RDS Centre Development Committee, we are approaching grant making trusts, foundations and corporate donors and would love to increase these introductions. If you have a connection to a trust, foundation or you work for a business that you think would be interested in supporting the centre please contact Eva (grant making trusts) or Anna (corporate).

Generous gifts

We have been fortunate to receive sizeable donations from two separate donors towards our appeal to create the world’s first Centre for Rare Dementias. Our generous donors have asked us to use these donations to incentivise fundraisers to support this appeal and so we are delighted to give you this chance to maximise your fundraising.

If you take on a fundraising challenge or host an event for this appeal and raise either £500 or £5,000, you will unlock a further £500 or £5,000 donation. This is a great opportunity to maximise your support for this exciting project, so please help to spread the word. We have already had a number of people taking up the offer including one of our Trustees, who is organising a Zoom Quiz evening next month and is aiming to raise £5,000 so she can double her fundraising!

Not quite sure what kind of event or challenge you fancy? Don't worry, we have lots of ideas on our website –  just click below. After you've decided, you simply need to email Alexis to let her know you're interested in taking up the matched funding offer.