Zellweger UK – Annual Report and Unaudited Financial Statement.
Constitution Incorporated Organisation registration number: 1166389
1[st] September 2024 to 31[st] August 2025
Trustees - Chair – Mrs Natasha Anderson Hunt.
Vice Chair and Head of Safeguarding– Mrs Alexandra McConville
Treasurer – Miss Kerry Hughes
Secretary and Web Design – Ms Carly Brown
Family Liaison and Fundraiser– Mrs Rudi Evans
Members -
Familes supported - 67
Fundraisers –Jenny Flemming, Suzanne Cooper, Rudi Evans, Carly Brown, Alex Roberts, Kerry Hughes, The Wessex Beardsmen.
Number of Volunteers – Family Conference Volunteers = 10
General running of Charity - Trustees = 5
Registered Address - 7 Wildmoor Walk, Havant, Hants PO9 5QY.
Correspondence Address - 75 Elder Close, Chard, Somerset, TA20 1BQ
Objects - A. To promote and protect the physical and mental health of sufferers of Peroxisomal Biogenesis Disorder and their families in the U.K. and Ireland by provision of grants and/or equipment, support and practical advice.
B. To advance the education of the public by supporting research into Peroxisomal Biogenesis Disorder and disseminating the useful results for public benefit.
Activities - Zellweger UK held the Family Conference in Devon July 2025, where 59 people attended from 10 families. A smaller turn out than previous years due to late confirmation from the hotel for the available dates. Two newly diagnosed families attended and had the opportunity to meet scientists, doctors, other families and the Charity SENSE. Activities were provided for children and siblings. We extended the weekend from Thursday Evening to Monday morning to include a professionals day on the Friday, freeing up more time for family fun over the weekend.
The charity has given out £600 in grants to assist families towards the cost of hospital stays.
We continue to offer £250 towards memory jewellery for bereaved families, £300 for hospital stay and a £500 per year towards equipment not covered by the NHS for affected children.
The charity continues to run several 24/7 online support groups.
Locations - Zellweger UK is run from England, Devon, Somerset, Wiltshire, Surrey and Hampshire.
Grants received – Zellweger UK received two grants, £1500 from Enterprise Mobility and £250 from CIF Community Investment Fund.
Restricted Income – There is currently no restricted income.
Reserves - Zellweger UK has no payroll or assets to maintain. Over heads are minimal allowing profits gained to go direct towards the objects of the charity.
At the end of August 2025 we held £41,171.26 in our accounts. £10,000.00 is still considered as held in reserve.
Values
Zellweger UK is run on an entirely voluntary basis, and we aim to be environmentally conscious in our choices for promotional merchandise and products, using recycled or recyclable materials whenever we can. We have a strict moral code of acceptance and nonjudgement, which we promote in our forums and exercise ourselves to try to make a positive difference in peoples’ lives.
Fundamental tasks
Our online support forums are available 24 hours a day, 7 days a week for all UK families affected by ZSD/PD. We offer practical assistance and support, facilitate emergency grants, and provide information for families in need of help. Supporters and collaborators
We continue to be globally partnered with The GFPD (Global Foundation for Peroxisomal Disorders) and to work closely with SENSE, a charity for deafblind people and people with multisensory loss. We also continue to liaise and collaborate with the paediatric metabolic team in Bristol, with consultants and researchers at the AMC (Faculty of Medicine – University of Amsterdam) who collectively made contributions towards our care booklet, and also with Shcrader Lab, a team of researchers at the University of Exeter with outreach collaborations.
The Charity made a loss this year of £8905.44. This is due to holding the Bi Annual Conference expenses against fundraising income. This loss has been absorbed by previous years running forward profits.
The accounts for the year are as follows, Profit and loss and Balance Sheet.
Statement of Activity
Zellweger UK
1 September, 2024-31 August, 2025
| Distribution account | Total |
|---|---|
| Income Donations Gift Aid In Memory PayPal Giving Fund UK Sponsored Swim Website Donations Total for Donations Fund Raising Clubberthon Easy Fund Raising King of the Tin Raffles Total for Fund Raising Grants Received Restricted Grants |
1,087.71 1,252.76 250.00 170.59 382.00 145.00 |
| £3,288.06 4,727.00 24.97 1,171.99 309.16 |
|
| £6,233.12 1,500.00 250.00 |
| Total for Grants Received Merchandise Income Total for Income Gross Profit Expenses Awards and Grants Hospital Stay Total for Awards and Grants Bank Charges Just Giving Charges PayPal Charges Stripe Charges Total for Bank Charges Computer Costs Software Costs Total for Computer Costs Conference Expenses Children's Entertainer Total for Conference Expenses Fund Raising Costs T Shirts for Fundraisers Total for Fund Raising Costs Office/General Administrative Expenses Other Professional Services Bookkeeping Total for Other Professional Services Printing, Postage and Stationery Processing Fees Travel and Accommodation Unapplied Cash Bill Payment Expenditure Total for Expenses Net Operating Income Other Income Interest Receivable Bank Interest Gift Aid Interest Total for Interest Receivable Total for Other Income Net Other Income Net Income |
£1,750.00 26.00 |
|---|---|
| £11,297.18 | |
| £11,297.18 600.00 |
|
| £600.00 0.35 288.06 2.60 52.61 |
|
| £343.62 1,888.06 |
|
| £1,888.06 14,679.79 777.67 |
|
| £15,457.46 21.88 1,249.60 |
|
| £1,271.48 149.99 605.00 |
|
| £605.00 22.83 1.16 283.05 0.00 |
|
| £20,622.65 | |
| -£9,325.47 0.47 370.89 48.67 |
|
| £420.03 | |
| £420.03 | |
| £420.03 | |
| -£8,905.44 |
Statement of Financial Position Zellweger UK
As of 31 August, 2025
| Distribution account | Total |
|---|---|
| Cash at bank and in hand Lloyds Bank Lloyds Fixed Term Deposit PayPal Petty Cash Total for Cash at bank and in hand NET CURRENT ASSETS NET CURRENT ASSETS (LIABILITIES) TOTAL ASSETS LESS CURRENT LIABILITIES TOTAL NET ASSETS (LIABILITIES) Capital and Reserves Opening Balance Equity Retained Earnings Net Income Total for Capital and Reserves |
40,149.44 0.00 1,021.82 0.00 |
| £41,171.26 | |
| £41,171.26 | |
| £41,171.26 | |
| £41,171.26 | |
| £41,171.26 50,076.70 -8,905.44 |
|
| £41,171.26 |
Signed Treasurer
Zellweger UK - Annual Chairperson Report
For the period 1[st] September 2024 – 31 August 2025
I am looking back at this past year with a great deal of pride. Despite many of our team experiencing difficult times in their lives, making running a charity challenging, we have still had a positive year and have continued to strive to make a difference in the lives of the families we support. While we have run at a loss, as previously mentioned by our Treasurer Kerry, this is due to another very successful conference and has been absorbed by previous years’ profits; a key factor in our decision to reduce conferences to a biennial event rather than annual.
This year’s conference was a great success, welcoming two new families, and reconnecting with old friends. I was sadly unable to attend for the first time since we held our first meet, due to unfortunately circumstances at home. While this was incredibly hard, I was heartened
to be part of the planning, and thoroughly enjoyed seeing the photos and video snippets, and hearing all about what a lovely time everyone had.
We have supported two families with grants to cover the high cost of repeated and/or long stay hospital admissions, which has been gratefully received, taking some of the financial burden off of families in uncertain and frightening times in terms of their child’s health.
Looking forward to next year, we are looking to enlist the help of some new volunteers to focus on fundraising for and applying for new charity grants, as well as looking at ways to better support families and encourage more applications for family grants so that we can make an ever bigger impact on the lives of children affected by Zellweger Spectrum (and related) disorders.
Signed Chair
N. Anderson-Hunt