Leigh Network
Charity 1184735
Overview
Summary
Leigh Network appears to occupy a distinctive role at the intersection of peer support, family connection and research advocacy for people affected by mitochondrial disease. Its model seems rooted in lived experience of diagnostic isolation and bereavement, using regular online contact and accessible family gatherings to create belonging while linking families to specialist knowledge. Rather than operating as a broad health service, it appears to concentrate on a small but consequential gap: helping families navigate a rare, variable condition while sustaining hope through connection and research.
Operational geography
Coverage: National
Operational areas:
Evidence and reasoning
Supporting evidence
Remaining uncertainties
- Direct evidence from the Charity Commission records Birmingham City as an area where Leigh Network operates, but neither the register nor the organisation's website identifies a current Birmingham ward, neighbourhood or City Centre service location.
- The website says that family days have taken place at Cadbury World, which is in Birmingham, but describes these as events held 'over the years' and does not give dates or confirm that this is a current or recurring Birmingham venue.
- There is no evidence of a permanent Birmingham operational base. The Charity Commission states that the charity does not own or lease land or property.
- The Wellcome Trust/Newcastle research connection materially extends the charity's activity beyond Birmingham, but the available evidence describes fundraising support for research rather than a Birmingham-delivered partnership.
Additional evidence needed
- A current events programme, booking confirmation or annual report naming the locations and dates of recent or planned Birmingham family days.
- Confirmation from Leigh Network of whether it currently delivers any in-person support, outreach or partnership activity in a specific Birmingham ward or recognised place.
- Details of any Birmingham-based referral, clinical or community partners that regularly host or deliver Leigh Network activity.
Areas of work
- Arts/culture/heritage/science
- General Charitable Purposes
- Other Charitable Purposes
- The Advancement Of Health Or Saving Of Lives
Who they help
- Children/young People
- People With Disabilities
How they help
- Provides Advocacy/advice/information
- Sponsors Or Undertakes Research
Discoveries involving this organisation
The Atlas has not published any Discoveries involving this organisation yet.
Observations
A response to isolation, not only a disease charity
The available evidence suggests that reducing isolation is Leigh Network's central operating purpose, with awareness and research support reinforcing that aim.
Why it matters
This helps distinguish the organisation from a conventional research fundraiser: its value may lie in making an uncommon and unpredictable diagnosis more socially navigable for families.
Show evidence
“Leigh Network was started in 2010 after Faye Wylie felt she had nowhere to turn following her diagnosis.”
Source:Organisation“The charity holds monthly Zoom calls to ease isolation.”
Source:Organisation
Peer connection is combined with specialist access
Leigh Network appears to act as a bridge between families' lived experience and mitochondrial expertise, rather than treating these as separate forms of support.
Why it matters
This hybrid role may make the organisation especially useful where families need both emotional recognition and credible updates about a complex condition.
Show evidence
“Family days sometimes include professionals who share new developments in research.”
Source:Organisation“The charity raises funds for research at The Wellcome Trust based in Newcastle.”
Source:Organisation
Accessibility seems embedded in its community-building model
Its choice of family-oriented, accessible venues may indicate that participation is designed around the practical realities of disability and family life, not simply event attendance.
Why it matters
This suggests an organisational strength: it may translate awareness of health-related barriers into the way it convenes people.
Show evidence
“Family days have been held at Cadbury World and Legoland.”
Source:Organisation“These are described as family-friendly and accessible venues.”
Source:Organisation
- The scale, geographic reach and frequency of support beyond annual events and monthly calls are unclear.
- It is unclear how families are referred, whether it collaborates with clinical services, and how it measures impact.
Remaining uncertainties
- Recent beneficiary numbers, locations, ages and feedback from families.
- Details of research partnerships, funding amounts and relationships with healthcare or rare-disease organisations.
Additional evidence needed
Charity Commission profile
Activities
Leigh Network supports families across the UK affected by mitochondrial disease both with an online presence where families can share information and in person. We hold annual meet ups which include family fun days out, sometimes including a doctor specialising in the condition. We also support research and raise awareness. We hold monthly zoom calls to ease the isolation.
Charity objects
TO PRESERVE AND PROTECT THE PHYSICAL AND MENTAL HEALTH OF THOSE AFFECTED BY MITOCHONDRIAL DISEASE BY RAISING AWARENESS OF MITOCHONDRIAL DISEASE AND SUPPORTING RESEARCH INTO THE CAUSES AND TREATMENT OF THE DISEASE.