Who we are
SLC6A1 Connect is a patient advocacy organization focused on supporting individuals and families affected by SLC6A1-related disorders, which are rare neurological conditions caused by mutations in the SLC6A1 gene.
The role
?Help guide a rare disease charity through its next chapter
As a small
but passionate UK-based charity, we are seeking a Trustee with a background in
fundraising to help us build sustainable income streams. With no current
UK-based staff and limited resources, your expertise will be instrumental in
helping us grow our fundraising capacity and secure vital funding for research,
family support, and advocacy.
In this
role, your responsibilities could include:
- Leading
the development and implementation of a fundraising strategy - Identifying
and pursuing grant opportunities, corporate partnerships, and individual giving
campaigns - Supporting
the creation of compelling fundraising materials and donor communications - Ensuring
compliance with relevant fundraising regulations and best practices
What We’re Looking For
We are
particularly interested in individuals with experience in:
- Charity
fundraising (individual giving, trusts and foundations, corporate sponsorships) - Grant
writing and bid development - Strategic
planning and income generation - Building
donor relationships and stewardship - The
UK charity sector, including knowledge of fundraising regulations
Soft
skills we value include:
- The
ability to evaluate diverse viewpoints? - The
willingness and flexibility to support the Board with a range of tasks - Adaptability
to shifting priorities and deadlines
We particularly
welcome applications from individuals with lived experience of rare diseases.
However, this isn’t essential.
Why Join Us?
- “The charity gives me hope and comfort that
someone is working tirelessly to help find a cure for our children.”- Dan,
parent of a six-year-old diagnosed with SLC6A1 - “The charity gives me hope and comfort that
someone is working tirelessly to help find a cure for our children.” – Helen, parent of an
individual diagnosed with SLC6A1 at the age of 30 - “Volunteering
with SLC6A1 Connect UK has given me a sense of purpose and belonging during a journey
that can often feel isolating. Being part of this community means connecting
with others who truly understand, sharing hope, supporting vital research, and
working together to create a better future for our children.”
You’ll be joining a
charity that is:
- Led by lived experience
- Focused on impact and innovation
- Ready to grow with your guidance
What We Offer
- The
opportunity to shape the future of a rare disease charity - The
chance to develop a fundraising strategy from scratch - The
platform to advocate nationally and build networks - The
possibility to use your skills for good
FAQs
- “I
don’t think I have enough time.”
We estimate around 4-6 hours per month, including quarterly board
meetings and one strategy day per year. - “I’ve
never been a trustee before.”
We welcome all backgrounds and provide support to help you succeed.
How to Apply
Send your CV and a short cover letter to Lindsay
Randall (lindsay.randall@slc6a1connectuk-aq.org)
by Wednesday 5th November. If you have any questions about
this position, please reach out to Lindsay.