Small Charity Week amplifies, supports and connects small charities across the UK. We’re proud to partner with small charities to find leaders who are inspiring, authentic and forward-thinking.

Laura Dowswell​​​​ is the Chair of Bardet-Biedl Syndrome UK (BBS UK), leading the Board of Trustees to ensure that the charity remains legally compliant, governance-focused, financially sound and sustainable, as well as overseeing the development of their three-year strategy:

“My daughter was diagnosed with the very rare, genetic syndrome aged 13 and it was a very difficult time for our family. We all received lots of support from BBS UK and I wanted to give something back. I saw an advert for Trustees of the Board and thought I could utilise my work skills. I was a trustee for a few years, had a brief spell as Treasurer then became Chair.

I always enjoy representing the charity whether as a fundraiser or a reception or event and helping to raise awareness of both the syndrome and the charity.”

Bardet-Biedl Syndrome UK was originally established in 1993 and is the only registered charity supporting people with Bardet-Biedl Syndrome, their families, and carers in the UK. It is a user-led organisation, represented by adults with Bardet-Biedl Syndrome (BBS) and parents of children with BBS.

Supporting over 640 people diagnosed with BBS, along with parents, carers, siblings and professionals involved in all aspects of care and support, their aims are

‘to preserve and protect the health and promote the welfare of persons who have BBS and to advance the education of the medical and educational professionals and the public about BBS’.

How does your charity collaborate with other local organisations or businesses to strengthen community ties?

BBS UK is part of an international collaboration with other BBS patient and support groups across the world (called BBS International). This helps with the sharing of knowledge and best practice, and is hugely important in the field of research for treatments of the condition. Many of our members travel abroad to represent BBS UK and vice versa, and professionals work together closely.

In addition, we have many fundraisers who are dedicated to raising much-needed funds for the charity, many of whom are connected to local businesses. As well as raising vital funds, this also helps to raise awareness of the syndrome and charity.

What are your hopes and aspirations for the future of your charity and the communities you serve?

This is my personal view and not necessarily that of the organisation.

I am retiring later this year and it’s my hope that the new Chair will be a strong leader and passionate about BBS UK and the needs of the community — which is an absolutely amazing group of people.

I hope the charity continues to gain funds to enable it to expand its services as the demand increases.

I hope that everyone who works for the charity, whether as staff, trustee, or volunteer, knows how much of a difference they make to those who need it most.

What benefits are there in operating as a small charity, that larger charities can’t compete with, particularly for your service users?

Being a small charity means that service users get more of a personal service and there is a very strong sense of community.

Our annual family conference weekend brings those with the syndrome, their parents, carers, families, as well as professionals together to share information and support, and many have become friends and support each other throughout the year.

What advice do you have for the future Chair?

I think the one thing about being a trustee is the keyword ‘trust’.

In a charity like BBS UK, the members elect the trustees to represent them and their interests and clearly put a lot of trust in those elected individuals.

It’s important to always bear in mind the members and service users and have their interests high on the agenda when strategy planning while trying to ensure the charity remains sustainable.

Marie McQuade has a long history of working with charities to create impact. She has been recruiting board members for charities across the country since 2023. You can get in touch with Marie via her LinkedIn profile or you can send her an email.