Zellweger UK – Annual Report and Unaudited Financial Statement.
Constitution Incorporated Organisation registration number: 1166389
1[st] September 2022 to 31[st] August 2023
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 – Jacob Price, Regitze Lybecker, Rudi Evans, Mark Stoodley from Club Dubs of Vanarchy, George Shurley, Jo Bunyan, Sarah Richards, Kingsbridge Risk, Elaine Lainey, Mrs Buckland, Hartpury University, Abhi stores Ltd, Carly Brown, Capital Finance and Leasing Ltd, Michael Scrader Uni of Exeter 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 was really pleased to be able to hold the Annual Family Conference weekend in Devon from the 21[st] July 2023 to 24[th] July 2023 after taking several years break due to the risks of COVID. Sixteen families attended along with Scientists from Michael Schraders lab at The University of Exeter, sensory experts from the charity SENSE, children entertainers, face painters, music therapy, etc.
The charity has given out £2281.55 in grants to assist families towards equipment for their children to help with quality of life and the new hospital stay grant.
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 online support groups.
Locations - Zellweger UK is run from England, Devon, Somerset, Wiltshire, Surrey and Hampshire.
Restricted Income - Grants had been received from SSIEM (Society for the Study of Inborn Errors in Metabolism) of £2616.66, Maximus Foundation of £2500 in previous account years and carried forward, a further £2840 last year from Jeans for Genes which was spent on the July 2023 Conference, restricted total to £7956.66. A private donation of £20 was also added
to the event costs. This was an incredible help to cover approximately half the costs of the event.
Confirmation that the grant money was used on the Conference with a break down of the weekend events with gratitude was sent to each grant provider.
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 2023 we held £50,094.43 in our accounts, £10,000 of this is reserved in a fixed 12 months, no access, saving account with 3% interest.
We will review increasing this amount to £15,000 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.
Accounts – Profit and loss
| Ordinary Income/Expense Income Amazon Smile Birthday Donations Club Fundraising Club Dubs of Vanarchy Total Club Fundraising Cycling Fundraising Jacob Price Total Cycling Fundraising Easyfundraising Facebook champaigns Fund Raising Events Golf Marathons Total Fund Raising Events |
Sep '22 - Aug 23 |
|---|---|
| 120.80 110.00 2,754.89 |
|
| 2,754.89 3,587.81 |
|
| 3,587.81 78.22 891.03 250.00 1,230.67 |
|
| 1,480.67 |
Gifts and Donations Income
| Gift Aid Gift Aid - Repayment Interest Gift Aid - Other Total Gift Aid Restricted Family Weekend Total Restricted Gifts and Donations Income - Other Total Gifts and Donations Income In Memory King of the tin Merchandise sold Bag Sales Mugs Pens Sports Bottle Stress balls Trolly coin Wrist Bands Total Merchandise sold Miscellaneous Income Paypal Giving Fund Uk Raffle income Website Donations Total Income Cost of Goods Sold Cost of Goods Sold Total COGS Gross Profit Expense Awards and Grants Grants towards Equipment Gym membership Hospital Stay Assistance Specific Assist to Individuals Music Therapy Total Specific Assist to Individuals |
5.20 1,190.55 |
|---|---|
| 1,195.75 20.00 |
|
| 20.00 1,286.90 |
|
| 2,502.65 2,175.00 848.14 0.00 6.00 0.00 0.00 0.00 3.00 0.00 |
|
| 9.00 17.98 2.50 529.00 762.25 |
|
| 15,869.94 398.20 |
|
| 398.20 | |
| 15,471.74 1,073.94 441.02 600.00 166.59 |
|
| 166.59 |
| Total Awards and Grants Bank Charges Just Giving Charges PayPal Charges SumUp Card Fees Bank Charges - Other Total Bank Charges Computer and Internet Expenses Conference Expenses Childrens entertainment Kraft Tags Neck Wallets Lanyards Refreshments Tshirts Total Conference Expenses Fudraising Equipment Insurance Expense Office Expense Consumables Software Stationery Total Office Expense Postage and Delivery Professional Fees Bookkeeping Total Professional Fees Raffle Prizes Travel and Meetings Conference, Meetings Family Day Hotel Volunteer Mileage Volunteer travel Total Travel and Meetings Volunteer Expenses Total Expense Net Ordinary Income Profit for the Year |
2,281.55 221.85 13.85 4.62 0.00 |
|---|---|
| 240.32 697.15 943.35 5.53 170.33 9.98 1,054.87 |
|
| 2,184.06 58.80 236.60 127.96 1,238.04 2.25 |
|
| 1,368.25 9.20 307.50 |
|
| 307.50 46.09 263.52 11,101.25 219.06 359.24 |
|
| 11,943.07 75.00 |
|
| 19,447.59 | |
| -3,975.85 | |
| -3,975.85 |
Amazon Smile have notified us that they will be stopping the donations to Charity.
The Charity made a loss this financial year due to donations being down and grants being given in previous years towards the Conference expenses and then delay in being able to hold the conference due to COVID. The Conference hotel invoice was settled in full this financial year, covered by previous year's profit.
Balance Sheet –
| 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 Petty Cash Zellweger UK Total Cash at bank and in hand Total Current Assets Current Liabilities Accounts Payable Accounts Payable Total Accounts Payable Total Current Liabilities NET CURRENT ASSETS TOTAL ASSETS LESS CURRENT LIABILITIES NET ASSETS |
31 Aug 23 |
|---|---|
| 1,102.94 1,944.00 |
|
| 1,944.00 | |
| 3,046.94 3,174.90 |
|
| 3,174.90 10,000.0 0 1,238.54 500.00 38,355.8 9 |
|
| 50,094.4 3 |
|
| 53,269.3 3 106.79 |
|
| 106.79 | |
| 106.79 53,162.5 4 |
|
| 56,209.4 8 |
|
| 56,209.4 8 |
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Capital and Reserves
Merchandise 3,174.90
57,010.4
Unrestricted Net Assets 3
Profit for the Year -3,975.85
56,209.4
Shareholder funds 8
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Signed Treasurer
Zellweger UK - Annual Chairperson Report
For the period 1[st] September 2022 – 31 August 2023
2023 was a particularly emotionally lifting year for Zellweger UK, with the return of our annual Family Conference, once again held at the Manor House Hotel in Oakhampton; a well overdue emotional but wonderful time for the families we support, for us as a team and everyone involved. We had some incredible speakers, both medical and from the field of Peroxisomal Disorder research. This year our focus was heavily on allowing families time to spend time together, on therapies for children with the wonderful support of the deafblind charity Sense, and on peer-to-peer support, tackling head on some of the hardest impacts of peroxisomal disorder on children and their families.
Moving forward with this, we are aiming to hold our conference biennially, which will allow us more time to finance each conference as well as extra organisational time. With this I mind, we are aiming to open the presentations to healthcare professionals and the members of the teams who support children affected by a peroxisomal disorder.
The efforts of our fundraisers continue to astound me, with the most incredible show of support despite the cost-of-living crisis and such turbulent times. While our finances appear to run at a loss this year due to the cost of our annual conference, funds were already set aside for this and the funds we’ve raised this year will continue to allow us to support families both emotionally and practically with equipment grants and small financial grants to help cover the increasing cost of multiple/prolonged hospital stays. It will also allow us to continue to support bereaved families with small grants for memorabilia – often in the form of, but not limited to hand/foot/fingerprint jewellery, something that has continued to offer comfort to families who have lost children to this awful disease.
I was grateful to have been invited back by Professor. Michael Schrader, to offer a presentation to undergraduate students as part of a patient-centred session on Cell Biology of Disease at the University of Exeter. I was particularly moved by a student who sent some
incredibly kind and thoughtful feedback that highlights the impact of reaching out to tell the unique and incredible stories of our children.
I hope moving forward that we can continue to increase our outreach and public benefit, especially moving forward with our care booklet for families and healthcare teams of children affected by peroxisomal disorders, which was forced to be put on the backburner in previous years. We will continue to offer support to 72 families and to offer a place of comfort to newcoming families over the next year, to increase public awareness and to support some exciting upcoming research. Here is to an even better 2024.