Zellweger UK – Annual Report and Unaudited Financial Statement.
Constitution Incorporated Organisation registration number: 1166389
1[st] September 2023 to 31[st] August 2024
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 – Mrs Rudi Evans
Members -
Family Members supported - 72
Fundraisers – Mark Stoodley from Club Dubs of Vanarchy, George Shurley, Tegan Foxley, Andover College, Gabriel Constant, Rudi Evans, Aldershot LFR, Regitze Lybecker, Abhi stores Ltd and Kerry Hughes.
Number of Volunteers – Fundraising Coordinator – Regitze Lybecker
Bereavement Coordinator – Gillian Donald
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 has made the decision to hold the Annual Family Conference every two years instead of annually due to rising costs from the Hotel and fall in annual donations. The 2024 Conference has been booked for 2025.
The charity has given out £1468.99 in grants to assist families towards equipment for their children to help with quality of life, such as a baby monitor, posture support pack and 2 wheelchairs. The charity also granted £555.05 towards memory jewellery for parents who are bereaved.
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.
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 2024 we held £50,076.70 in our accounts, £10,302 of this is reserved in
a fixed 12 months, no access, saving account with 3% interest.
We will review increasing this amount to £20,000 next year.
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 profit this year of £89.06. There were some conference expenses that came from the previous financial year.
The accounts for the year are as follows, Profit and loss and Balance Sheet.
| Ordinary Income/Expense Income Bank Interest Earned Club Fundraising Club Dubs of Vanarchy Total Club Fundraising Easyfundraising Facebook champaigns Birthday Donation Facebook champaigns - Other Total Facebook champaigns Fund Raising Events Jingle Bells Rock Marathons Total Fund Raising Events Gifts and Donations Income Gift Aid Gifts and Donations Income - Other |
Sep '23 - Aug 24 |
|---|---|
| 302.00 500.00 |
|
| 500.00 122.01 25.00 285.00 |
|
| 310.00 315.00 510.00 |
|
| 825.00 154.99 784.13 |
| Total Gifts and Donations Income In Memory Investment Income King of the tin Paypal Giving Fund Uk Website Donations Total Income Gross Profit Expense Awards and Grants Grants towards Equipment Total Awards and Grants Bank Charges Just Giving Charges PayPal Charges Total Bank Charges Computer and Internet Expenses Conference Expenses Childrens entertainment Conference Banner Leaflets & Flyers Conference Expenses - Other Total Conference Expenses In memory Jewellery Office Expense Software Stationery Total Office Expense Postage and Delivery Professional Fees Bookkeeping Total Professional Fees Promotional Stock T-shirts for fundraisers Total Promotional Stock Travel and Meetings |
939.12 1,233.75 0.00 435.73 198.45 133.00 |
|---|---|
| 4,999.06 | |
| 4,999.06 1,468.99 |
|
| 1,468.99 251.56 4.32 |
|
| 255.88 238.66 13.39 91.24 116.16 88.56 |
|
| 309.35 555.05 1,321.77 8.95 |
|
| 1,330.72 6.00 327.50 |
|
| 327.50 320.65 |
|
| 320.65 |
| Conference, Meetings Total Travel and Meetings Total Expense Net Ordinary Income Profit for the Year ASSETS Fixed Assets Computer Equipment Furniture and Fixtures Medical Equipment Total Furniture and Fixtures Total Fixed Assets Current Assets Other Current Assets Stock Total Other Current Assets Cash at bank and in hand LLoyds Fixed Term Deposit PayPal Zellweger UK Total Cash at bank and in hand Total Current Assets NET CURRENT ASSETS TOTAL ASSETS LESS CURRENT LIABILITIES NET ASSETS Capital and Reserves Merchandise Unrestricted Net Assets Profit for the Year Shareholder funds |
97.20 97.20 4,910.00 89.06 89.06 31 Aug 24 1,102.94 1,944.00 1,944.00 3,046.94 3,174.90 3,174.90 10,302.00 903.82 38,870.88 50,076.70 53,251.60 53,251.60 56,298.54 56,298.54 2,280.96 53,928.52 89.06 **56,298.54 ** |
97.20 |
|---|---|---|
| 97.20 | ||
| 4,910.00 | ||
| 89.06 | ||
| 89.06 |
Signed Treasurer
Zellweger UK - Annual Chairperson Report
For the period 1[st] September 2023 – 31 August 2024
2024 has been a difficult year for our charity with the cost of living making its presence felt on our small charity. That said, the positivity continues in the emotional and financial support we have continued to offer families impacted by peroxisomal disorders.
Organisation of our 2025 Family conference and meet is in full swing, and we are looking forward to bringing families together again for a weekend of connections and activities for families affected by Zellweger Spectrum Disorder and other closely related peroxisomal disorders.
A highlight of this year was being invited to offer another presentation on behalf of Zellweger UK, for 3[rd] year cell biology students at the University of Exeter, this time bringing along a couple of members of my family. It was again received really well from some of the most engaging and inspirational young people I have met. It’s always inspiring to stand in front of the next generation of potential researchers.
Moving forward this year we are planning to increase our grant applications to bring some much-needed funds for our upcoming conferences, and to settle a date for the 2027 conference early as well as secure speakers with plenty of advance notice in hope of making the next conference bigger and better than ever.