## **IDIOPATHIC INTRACRANIAL HYPERTENSION UK (IIH UK)**
## **TRUSTEES’ ANNUAL REPORT AND ACCOUNTS 2022-23**
(Registered Charity Number – England & Wales 1143522, Scotland SC043294)
## **Charity Trustees during the report period**
1. The following represented IIH UK as trustees during the report period 1 July 2022 to 30 June 2023:
Michelle Williamson Chair Clare Parr Information Rep Betsy Clark Treasurer Amanda Denton Research Rep Kerryann Chalmers-Worth Secretary (From March 23)
## **Structure, Governance and Management**
2. IIH UK was founded in 2008 and established as a registered charity in England and Wales in 2011 and in Scotland in 2012. It is governed by its founding constitution, as subsequently amended on 12 May 2012, 21 June 2014 and 13[th] July 2019. The charity is constituted by association.
3. All trustees have given their time voluntarily during 2022-23 and have not received remuneration or any other benefits in undertaking their duties. Trustees and Representatives are permitted to claim expenses to ensure they are not out of pocket whilst undertaking their volunteer responsibilities. (E.g., travel and accommodation.) Following endorsement by the 2014 Annual General Meeting (AGM), trustees are elected for a period of 3 years and remain empowered to appoint new trustees in-year by extraordinary trustee meeting, although trustees appointed in this way must seek re-election at the following AGM.
4. IIH UK is a member of the National Council for Voluntary Organisations (NCVO), Rare Disease UK, the Neurological Alliance, the Health and Social Care Alliance Scotland, Genetic Alliance, Benefits and Work and an affiliate of the James Lind Alliance. We also support the Brain and Spine Foundation and hold a lotteries license with Sunderland City Council.
5. We became General Data Protection Regulation (GDPR) compliant in March 2018.
6. We bank with the National Westminster Bank. Facebook (Fb) has become our main platform for donations. Just Giving is our main platform for fundraising. We also accept donations via the Charities Aid Foundation. (See item v below.)
IIH UK ANNUAL REPORT AND ACCOUNTS 2021-22 Website www.iih.org.uk; Twitter @IIHUK E-mail info@iih.org.uk Facebook www.facebook.com/IIHUKCharity
7. At the year-end, our team members are Shelly Williamson, Trustee. Clare Parr, Trustee. Betsy Clark, Trustee. Amanda Denton, Trustee. Kerry Ann Chalmers-Worth, Trustee. Krystal Kirkby, Research Rep. Nisha Sedani, Research Rep. Katie Williamson, Shop Rep. Mellissa Monsoon, Arts and Culture Rep. Lisa Whelan, Publicity Rep. Lizzie Davies, Newsletter Rep. Kirsty Robertson, Fundraising Rep.
## **Charity Objects**
8. The charity’s objects as amended on 13 June 2019 are as follows:
- a. To provide the best possible support and advice network for people with Idiopathic Intracranial Hypertension (hereafter referred to as IIH) and their families.
- b. To advance the education of the public in general, people with IIH and the medical community, in particular on the subject of IIH.
- c. To promote and support research for the public benefit on all aspects of the condition IIH and to publish the useful results.
- d. To raise the profile of the charity IIH UK.
## **Summary of main activities undertaken by IIH UK for the public benefit in relation to the objects**
9. IIH UK would not be able to exist without the small number of dedicated volunteers who freely give their time; many of whom have IIH themselves. They assist with the day- to-day running of the charity in areas such as fundraising, membership, publicity, merchandise, newsletter production. In planning and undertaking the activities during the report period, IIH UK trustees were cognisant of the Charity Commission’s guidance on public benefit. With the objectives in mind, the Charity’s key activities fall into 4 main areas: to provide an excellent support network for people with IIH and their families/friends/carers; to educate the public and the medical community, in particular about IIH; to support and promote research into the condition, and finally, to raise the profile of IIH UK.
## **Summary of IIH UK’s achievements during 2021-22**
IIH UK has been very proactive throughout the year, as shown below:
## **Support**
- a. **IIH UK website.** The Charity’s website traffic at www.iih.org.uk continues to increase. During this fiscal year 227,719pages were viewed, 10,171 more than last year. The website is maintained by FAT Promotions and is kept up to date by both FAT and some of our volunteers. Our new website was launched during 2021. The members only area has proved popular, it is an area where members can view current and past newsletters, download benefit information guides and find the latest AGM news as it is announced.
IIH UK ANNUAL REPORT AND ACCOUNTS 2021-22 Website www.iih.org.uk; Twitter @IIHUK E-mail info@iih.org.uk Facebook www.facebook.com/IIHUKCharity
## **Website statistics.**
- b. We will continue to offer our support and the latest medical and research information on our website www.iih.org.uk, on Facebook IIH UK National Charity, Twitter @IIH UK and via our
- patient leaflets and patient conference/webinar.
## c. **HOPE project.**
Our HOPE project created a virtual support community for people with IIH and parents of children with IIH from around the UK.
Now in its second year the Hope Project has provided the people we support with the knowledge, skills and confidence to cope with many of life’s challenges, frustrations, fears and isolation. To help people reach their potential by supporting them at the earliest possible stage, Coventry University’s evaluation of the HOPE Programme has shown that people are emotionally and psychologically healthier and more resilient in the face of ongoing stress. Further, the course improves people’s quality of life through teaching important life skills such as goal setting, relaxation and stress management. It builds strong relationships in and across community, people who attend HOPE courses often remain in touch with each other after the course ends and provide each other with ongoing peer- support and encouragement. This is important in a rare condition as many people do not know anyone else with their condition. Online delivery will support the further development of an IIH peer support community across the UK.
IIH UK ANNUAL REPORT AND ACCOUNTS 2021-22 Website www.iih.org.uk; Twitter @IIHUK E-mail info@iih.org.uk Facebook www.facebook.com/IIHUKCharity
You can read about the HOPE programme here: htps://www.h4c.org.uk/hope-programme
## **Statistics for IIH Hope Courses during the fiscal year.**
||Date of Course|Enrolled|Not actve|Completed Course|
|---|---|---|---|---|
|Adult|08/09/2022|50|14|36|
|Adult|12/01/2023|26|5|21|
|Parents|12/01/2023|7|1|6|
|Adult|20/04/2023|65|17|48|
|Parent|20/04/2023|9|4|5|
- d. **Twitter.** We have now been on twitter for 12 years @IIH UK. A lot of clinicians are on Twitter whom you can follow, ask questions etc. We have 2642 followers on twitter, up 94 on the previous year.
- e. **Instagram.** We created an Instagram account in March 2021. Although slow to take off we are slowly building our followers and now have 684.
## **Educaton.**
- f. **Leaflets** . You will find the following leaflets on our website.
What is IIH
What is IIH without Papilloedema (IIHWOP)
Optic Nerve Sheath Fenestration
IIH and Weight
Headache Acetazolamide
Information for friends, family and carers ICP Monitoring
IIH and Education Benefits information Employment with IIH
Medication Overuse Headache in IIH Shunts and IIH
Stents and IIH Topiramate
Visual Problems in IIH
When I go to the Eye Clinic
IIH UK ANNUAL REPORT AND ACCOUNTS 2021-22 Website www.iih.org.uk; Twitter @IIHUK E-mail info@iih.org.uk Facebook www.facebook.com/IIHUKCharity
## **Future Leaflets:**
Lumbar Puncture
Pappilloedema
Pregnancy and Family Planning with IIH
IIH and Flying
Greater Occipital Nerve Block (GON)
BOTOX / Calcitonin Gene-Related Peptide (CGRP)
g. This year our **patient conference** was held on 14[th] September 2022 via online webinar.
**Speakers**
**Dr Sally Abbott** - Dietician
Sally Abbott is a Dietitian who has worked in obesity services for the past nine years and has treated patients with IIH. She is the Clinical Lead for Specialist Weight Management at University Hospitals Coventry and Warwickshire NHS Trust and an Assistant Professor in Dietetics at Coventry University. Sally is also the Bariatric Officer for the British Dietetic Association (BDA) Obesity Specialist Group committee and sits on the British Obesity and Metabolic Surgery Society council.
**Amanda Denton** – Research Representative and Trustee of IIH UK. Update on IIH UK activities over 2022.
**Fionnuala Donovan** - Highly specialist neuro-physiotherapist, Guys and St Thomas NHS Foundation Trust.
How can Physiotherapy best support people living with IIH? an update on the IIH UK funded research grant.
Summary: This talk will describe the current research being conducting in the IIH Physiotherapy led clinic at GSTT. This will include: 1. What the current literature says regarding Physical activity and IIH; 2. A summary of the current service and outcomes in the IIH Physiotherapy clinic; 3. A summary of 1:1 interviews conducting with people with IIH who have accessed the IIH clinic at GSTT with particular focus on physical activity and support; 4. Outlines of the next stages of the study including: the development of a larger short answered questionnaire to identify what support people with IIH would like from a physio led IIH clinic (based on the information gained in the 1:1 interviews); distribution of this questionnaire and a summary of the results; implementation of identified service based on questionnaire results; service review of the new service.
**Miss Olivia Grech -** Institute of Metabolism and Systems Research PhD Student, University of Birmingham Cognitive Function in people with IIH
Cognition issues have long been noted in Idiopathic Intracranial Hypertension (IIH), however, cognitive function is not widely recognised or addressed in IIH. Researchers performed cognitive tests in 66 IIH participants compared to 25 body mass index-matched control participants to identify impairments in reaction time, memory and executive function. Cognitive performance was
IIH UK ANNUAL REPORT AND ACCOUNTS 2021-22 Website www.iih.org.uk; Twitter @IIHUK E-mail info@iih.org.uk Facebook www.facebook.com/IIHUKCharity
also compared at the start of the study, after a lumbar and following 12-months of a weight loss intervention. The researchers demonstrated that executive function and attention is impaired in IIH participants compared to controls at baseline (start of the study with active disease). However, after a lumbar puncture (which temporarily reduced the brain pressure) the measure of attention improved in IIH participants. The cognitive issues identified were reversible, as participants improved in their measures of executive function, sustained attention and memory over 12months. These improvements were also linked to a reduction in brain pressure. Grech et al, propose that cognitive impairment should be accepted as a clinical feature of IIH and that cognitive deficits can improve over time and with reduction of intracranial pressure.
**Laura Kerbey** - HOPE programme facilitator- Live well with HOPE Update on the IIH UK funded Hope Programme for Parents of Children with IIH.
Laura's background as a parent talks about how the impact having a child with IIH had on her and her mental health, family, work etc.
Why she wanted to be a facilitator for the HOPE Programme
What was covered in the programme and how this is so beneficial to parents Benefits of the HOPE Cafes for parent carers
**Dr Anna Lynall** , Project Delivery Lead, HOPE for the Community – Live well with HOPE Update on the IIH UK and National Lottery Funded HOPE programme for Adults with IIH
This session will give an overview of the Hope programme for adults living with IIH that has been co-created with Hope for the Community CIC. Over 200 people living with IIH have now been through the programme and the session will explore the difference that the programme has made to the knowledge, skills and confidence of participants to manage their lives with IIH.
**Dr Mark Thaller,** Clinical Lecturer and Neurology Registrar. University of Birmingham Reproductive health in women with IIH.
This talk is based on several strands of his research looking at the impact of an IIH diagnosis on fertility, pregnancy complications of diabetes and pre-eclampsia, type of birth (i.e. caesarean section), practical guidelines for managing IIH in pregnancy and long term outcomes depending on the timing of pregnancy in relation to an IIH diagnosis.
**Dr Sui Wong** – Consultant Neurologist, Guys and Thomas, IIH UK Patron Update from IIH UK patron
- h. We continue to sponsor the **Paediatric IIH Special Interest Group** (SIG), led by Dr Krishnakumar - Addenbrookes, Cambridge. Our Chair Shelly Williamson and HOPE facilitator Laura Kerbey are members of this SIG. (both have children with IIH) also, Nisha Ravel, our Research Rep joined the SIG in February 2021. There were no face-to-face meetings during the year and all discussions were done via email.
## **Research**
- i. We continue to fund the travelling expenses for the Birmingham Trials which enables IIH Patients from further afield to take part via a research grant to University Hospitals
IIH UK ANNUAL REPORT AND ACCOUNTS 2021-22 Website www.iih.org.uk; Twitter @IIHUK E-mail info@iih.org.uk Facebook www.facebook.com/IIHUKCharity
Birmingham. We have also committed to fund the IIH: Life registry at a cost of £5,000 per annum.
- j. **IIH Life Registry** . The IIH Life registry was developed by Professor Alex Sinclair and captures routine clinical data from neurologists/ophthalmologists/ neuro-ophthalmologists and orthoptic led clinics that management IIH patients around the United Kingdom.
- The registry will help future care of IIH patients by researchers being able to use it for their research questions. Roll out to other hospitals was halted due to legal regulations, however they are now able to start to build out.
- k. **IIH Intervention Trial.** Is still ongoing **.** #10 of our Top ten areas for IIH research is ‘What is the
- best type of intervention to treat IIH’. We do not yet know which of the current available treatments are best to treat IIH and were delighted to be invited to the steering group to discuss the development of this new Stent v Shunt trial. This research aims to establish the best surgical intervention (shunt v stent) in people with IIH to prevent blindness. Finding out the most effective method of surgery is vital to improve the management and quality of life of people with IIH.
If you are selected to take part in this trial it is important to know that you are not able to choose the type of intervention that you want. Both (shunt v stent) are as equally important and as the aims of this research is to establish the best surgical intervention in people with IIH to prevent blindness it requires equal numbers of participants.
Birmingham University have the following to say about the IIH Interventions trial and why it is important.
‘IIH Intervention Trial is a randomised clinical trial that will compare two interventions for patients with Idiopathic Intracranial Hypertension (IIH) and progressive visual loss: Cerebrospinal fluid (CSF) shunting and Dural venous sinus stenting (DVSS).
Both interventions reduce intracranial pressure and preserve vision, but there has been no direct comparison between them and we still do not know which one is more effective. This is an important clinical question and the trial will change practice at national and international level. We have engaged patient groups (IIH UK) and opinion leaders from across the country in order to design high-quality research methodology, while providing our study participants with an exceptional research experience. The trial will enrol 138 patients from 15 UK hospitals who will be randomly allocated to one of the two interventions. We will assess which one is better at preserving vision, more cost-effective, their possible complications, and their impact on headaches and on quality of life. The trial will last for 5 years, and we commit to delivering patient-centred scientific research with integrity and strong ethics. Our vision is to advance knowledge, develop treatments and improve the care of patients with IIH.’
- l. Dr Wong, Guys and St Thomas, London was awarded the IIH UK Research Grant this year, here is a summary of her research funding bid. We will share the research finding with you once her research is completed.
IIH UK ANNUAL REPORT AND ACCOUNTS 2021-22 Website www.iih.org.uk; Twitter @IIHUK E-mail info@iih.org.uk Facebook www.facebook.com/IIHUKCharity
## **Summary of Dr Wong’s research funding bid** .
Idiopathic intracranial hypertension (IIH) is associated with excess body weight, and research has shown that weight loss may lead to remission of IIH. This has also been prioritised by people with IIH as a key area of research.
Physical activity is a key aspect of successful and sustainable weight management and can also improve other health conditions associated with IIH, including cardiovascular and metabolic health conditions.
At Guy’s and St Thomas’ NHS Foundation Trust (GSTT), they have a track record of working in partnership with people with IIH to develop services that empower them, including group consultations that facilitates peer-to-peer learning and lifestyle support to empower people with IIH to better manage their condition; and wellbeing workshops to support sustainable lifestyle measures including; physical activity. Their multidisciplinary IIH team includes physiotherapists who support physical activity for people with IIH.
This research aims to develop recommendations and practical implementations on physical activity for people with IIH. The work will include research into current evidence and gathering new evidence through research in partnership with people with IIH including focus groups, questionnaires and data gathered from pilot work on the effectiveness of group education sessions. Appropriate video guidance will also be developed in partnership with people with IIH. The work will be incorporated with current work on the HOPE programme for people with IIH. The gaps in knowledge in this area will also be identified.
Output from this research will be shared with the IIH UK trustees and members. This will also be disseminated to health professionals to advocate support and better care for people with IIH.
- m. We added 2 more Plain English Summaries to our website. Medical articles are notorious for being difficult to read which is why we request easy to read/understand versions.
Increased systemic and adipose 11β-HSD1 actvity in idiopathic intracranial hypertension
Idiopathic intracranial hypertension: evaluaton of births and fertlity through the hospital
- n. **Other notable research published during the year**
Increased systemic and adipose 11β-HSD1 activity in idiopathic intracranial hypertension htps://www.ncbi.nlm.nih.gov/pmc/artcles/PMC9346265/
Association of Amount of Weight Lost After Bariatric Surgery With Intracranial Pressure in Women With Idiopathic Intracranial Hypertension
htps://www.ncbi.nlm.nih.gov/pmc/artcles/PMC9536743/
Nuclear Magnetic Resonance Spectroscopy Metabolomics in Idiopathic Intracranial Hypertension to Identify Markers of Disease and Headache htps://www.ncbi.nlm.nih.gov/pmc/artcles/PMC9620805/
IIH UK ANNUAL REPORT AND ACCOUNTS 2021-22 Website www.iih.org.uk; Twitter @IIHUK E-mail info@iih.org.uk Facebook www.facebook.com/IIHUKCharity
Evaluation of diurnal and postural intracranial pressure employing telemetric monitoring in idiopathic intracranial hypertension htps://www.ncbi.nlm.nih.gov/pmc/artcles/PMC9628104/
Dysregulation of Amino Acid, Lipid, and Acylpyruvate Metabolism in Idiopathic Intracranial Hypertension: A Non-targeted Case Control and Longitudinal Metabolomic Study htps://www.ncbi.nlm.nih.gov/pmc/artcles/PMC10088035/
Defining the Phenotype and Prognosis of People With Idiopathic Intracranial Hypertension After Cerebrospinal Fluid Diversion Surgery
htps://www.ajo.com/acton/showPdf?pii=S0002-9394%2823%2900026-0
Different Characteristics of Pre-Pubertal and Post-Pubertal Idiopathic Intracranial Hypertension: A Narrative Review
htps://www.ncbi.nlm.nih.gov/pmc/artcles/PMC9988343/
Defining the Phenotype and Prognosis of People With Idiopathic Intracranial Hypertension After Cerebrospinal Fluid Diversion Surgery htps://www.ajo.com/acton/showPdf?pii=S0002-9394%2823%2900026-0
Current and emerging diagnostic and management approaches for idiopathic intracranial hypertension
htps://www.tandfonline.com/doi/full/10.1080/14737175.2023.2206567
## **Raising the Profle of IIH**
- o. Our online shop has lots of items to help raise awareness of IIH.
htps://www.iih.org.uk/secton/7/1/online_shop
- p. Trustees/Team members attended the following conferences during the
- year.
**CSF Disorders Day** – Edgbaston – July 2022
Attending other organisations’ conferences/meetings, albeit virtually this year, provides an opportunity for Trustees and Team Members to meet other attendees and develop friendships with other likeminded organisations enabling us to raise the profile of IIH.
- q. **Brain Awareness Week** (BAW) is the global campaign to increase public awareness of the progress and benefits of brain research. This reporting year we celebrated it from 13[th] –19[th] March.
- r. **September Awareness Month** . Provides an opportunity for people with IIH to get involved with raising awareness of IIH. Throughout the month of September, we posted daily on our Fb Charity page and Twitter. From interesting facts to supporters fundraising, the month of
IIH UK ANNUAL REPORT AND ACCOUNTS 2021-22 Website www.iih.org.uk; Twitter @IIHUK E-mail info@iih.org.uk Facebook www.facebook.com/IIHUKCharity
September was once again a tremendous success due to the shares and retweets the posts received.
We kicked the month off with Rachel Turners (founding member) poem which alone was viewed by 15,776 people! A great start to IIH Awareness Month. Once again, we created profile photos for people with IIH to share on the fb and twitter profiles. This year 35 people contacted Shelly to ask her to create a new profile photo for them. We also shared peoples stories of their experience of living with IIH and held a raffle which raised £243.00
- s. **Rare Disease Day** takes place on the last day of February each year. This year our Trustee Shelly created 60 profile pictures for people to add to their profile photo on Facebook. The theme for this year was ‘Rare is strong, rare is many, rare is proud’. Overall, it was a perfect day spent spreading awareness and raising the profile of Idiopathic Intracranial Hypertension.
- t. As a Charity run solely by Volunteers, we just had to celebrate **International Volunteers Day** on 5[th] December 2022. Twitter was the main platform for celebrating this day, raising the profile of IIH UK using the #InternationalVolunteersDay.
- u. Our Arts & Culture Representative Mellissa Fisher - Artist built projects around themes of invisible symptoms of IIH, aiming to help others, raise awareness and inspire creativity in the community. She held an exhibition in Margate, Kent, where she shared the community views on body positivity and stories of people of people with IIH diagnosis journeys.
- v. We also celebrated **Volunteers Week** which took place 1[st] – 7[th] June 2023.
- w. We backed the #BackThe1in6 campaign run by the Neurological to improve neuro services across the UK.
## **Fundraising**
- x. We use the following platforms to raise funds.
- a. **Just Giving:** provides us with our main source of income from fundraising.
- b. **Membership fees** : email membership@iih.org.uk to become a member.
- c. **IIH UK online awareness merchandise sales** : htps://www.iih.org.uk/secton/7/1/online_shop/
- d. **Easysearch** : www.iihuk.easysearch.org.uk/
- e. **Easyfundraising** : www.easyfundraising.org.uk/causes/iihuk/
- f. **The Weather Lottery:** www.theweatherlotery.com/charitesHomepage.php?client=IIHUK
- g. **The Charities Aid Foundation** : www.cafonline.org/system/charity-search-results
- h. **Facebook** : provides us with our main source of income from donations. www.facebook.com/fund/IIHUKCharity/
IIH UK ANNUAL REPORT AND ACCOUNTS 2021-22 Website www.iih.org.uk; Twitter @IIHUK E-mail info@iih.org.uk Facebook www.facebook.com/IIHUKCharity
- i. **PayPal Giving** : www.paypal.com/uk/fundraiser/charity/49628
- j. **eBay for Charities** : www.charity.ebay.co.uk/charity/IIH-UK/49628
- k. **Teespring** : www.teespring.com/en-GB/stores/iih-uk
- l. **DONATE:** https://platform.nationalfundingscheme.org/idiopathic-intracranialhypertension-united-kingdom-/HOPE
- m. **Charity Choice** : www.charitychoice.co.uk/idiopathic-intracranial-hypertension-unitedkingdom-18148
- y. **Grants Received.**
Arnold Clark - £2000 SSP Foundation - £500 Bistech Group PLC - £1000
Michelle Williamson. Chair
IIH UK ANNUAL REPORT AND ACCOUNTS 2021-22 Website www.iih.org.uk; Twitter @IIHUK E-mail info@iih.org.uk Facebook www.facebook.com/IIHUKCharity
|**Idiopathic Intracranial Hypertension UK**
|**Idiopathic Intracranial Hypertension UK**
|**Idiopathic Intracranial Hypertension UK**
|**No. 1143522**|
|---|---|---|---|
|**Receipts andpayments accounts**||||
|**For the period**
**from**|Period start date
01/07/2022|**To**|Period end date
30/06/2023|
**CC16a**
|**Section A Receipts and payments**|**Section A Receipts and payments**|**Section A Receipts and payments**|||||||
|---|---|---|---|---|---|---|---|---|
|**A1 Receipts**|**Unrestricted**
**funds**
**to the nearest £**||**Restricted**
**funds**
**to the nearest £**||**Endowment**
**funds**
**to the nearest £**|**Total funds**
**to the nearest £**
**2,216**
**4,965**
**4,397**
**6,780**
**10,476**
**2,142**
**-**
**3,242**
**124**
**-**
**-**||**Last year**
**to the nearest £**|
|
Donations & Fundraising|**2,216**||**-**||**-**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**-**|**2,216**||**906**|
|Just Giving|**4,965**||**-**|||**4,965**||**8,371**|
|Facebook|**4,397**||**-**|||**4,397**||**7,949**|
|Paypal GivingFund|**6,780**||**-**|||**6,780**||**2,313**|
|Other|**10,476**||**-**|||**10,476**||**11,383**|
|MembershipFees|**2,142**||**-**|||**2,142**||**2,313**|
|Conference Tickets|||**-**|||**-**|||
|Merchandise|**3,242**||**-**|||**3,242**||**2,206**|
|Bank Interest|**124**||**-**|||**124**||**6**|
|Refunds|**-**||**-**|||**-**||**9**|
||||**-**|||**-**|||
||||**-**|||**-**|||
|**_Sub total(Gross income for_**
**_AR)_**|
**34,341**||**-**||**-**|**34,341**||**35,455**
221|
||||||||||
|**A2 Asset and investment sales,**
**(see table).**|||||||||
||**-**||||**-**
**-**
**-**|**-**|||
||**-**|||||**-**||**-**|
|**_Sub total_**|**-**|||||**-**||**-**|
|**_Total receipts_ **|||||||||
||**34,341**||||**-**|**34,341**||**35,455**|
## **A3 Payments**
|
Governance|**£0**||**-**||**-**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**-**|**-**|||
|---|---|---|---|---|---|---|---|---|
|IT|**£1,926**||**-**|||**1,926**||**£1,600**|
|Merchandise (Stock Purchase)|**£431**||**-**|||**431**||**£726**|
|Paypal Fees|**£131**||**-**|||**131**||**£187**|
|Postage & Packaging|**£462**||**-**|||**462**||**£662**|
|Printing & Stationery|**£606**||**-**|||**606**||**£446**|
|Transport|**£0**||**-**|||**-**|||
|Misc|**£0**||**-**|||**-**|||
|Refunds|**£0**||**-**|||**-**||**£43**|
|Justgiving Membership|**£216**||**-**|||**216**||**£216**|
|Other Membership|**£121**||**-**|||**121**||**£60**|
|AGM/Patient Conf|**£0**||**-**|||**-**|||
|Symposium/Conference|**£0**||**-**|||**-**|||
|Partnership Donations|**£2,000**||**-**|||**2,000**||**£12,946**|
|Education|**£0**||**-**|||**-**|||
|Research & Alliance|**£4,344**||**-**|||**4,344**|||
|Surveys|**£0**||**-**|||**-**||**£372**|
|Representatives & Trustee Expenses|**£1,255**||**-**|||**1,255**||**£518**|
|Publicity and Profile|**£0**||**-**|||**-**|||
|Focus Meetinsg|**-**||**-**|||**-**|||
|Life Registry|**-**||**-**|||**-**|||
|Hope Program Child|**1,350**|||||**1,350**||**1,500**|
|Hope Prgram - Adult Donation|**5,700**|||||**5,700**||**4,020**|
|Events|||**-**|||**-**|||
|**_Sub total_ **|**18,541**||**-**|||**18,541**||**23,296**|
|**A4 Asset and investment**||||||||||
|---|---|---|---|---|---|---|---|---|---|
|**purchases, (see table)**||||||||||
||**-**||**-**||**-**||**-**|||
||**-**||**-**||**-**||**-**|||
|**_Sub total_ **|**-**||**-**||**-**||**-**||**-**|
|||||||||||
|**_Total payments_**|**18,541**||**-**||**-**||**18,541**||**23,296**|
CCXX R1 accounts (SS)
31/03/2024
1
|**_Net of receipts/(payments)_**
**A5 Transfers between funds**
**A6 Cash funds last year end**
**_Cash funds this year end_**|**15,801**|
|**-**|
|**-**|
|**15,801**||**12,159**|
|---|---|---|---|---|---|---|---|---|---|
||**-**||**-**||**-**||**-**||**-**|
||**51,874**||**-**||**-**||**51,874**||**39,715**|
||**67,675**||**-**||**-**||**67,675**||**51,874**|
CCXX R2 accounts (SS)
31/03/2024
2
## **Section B Statement of assets and liabilities at the end of the period**
|**Categories**
Signed by one or two trustees on
behalf of all the trustees
**B1 Cash funds**
**B2 Other monetary assets**
**B3 Investment assets**
**B4 Assets retained for the**
**charity’s own use**
**B5 Liabilities**|**Details**
**Details**
Signature
**Details**
(agree balances with receipts and payments
account(s))
**Details**
Stock
**Details**
Bank Accounts
Paypal
Petty Cash
**_Total cash funds_**|**Unrestricted**
**funds**
**Restricted**
**funds**
**to nearest £**
**to nearest £**
**66,496**
**-**
**1,108**
**-**
**71**
**-**
**67,675**
**-**
OK
OK
**Unrestricted**
**funds**
**Restricted**
**funds**
**to nearest £**
**to nearest £**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**Fund to which**
**asset belongs**
**Cost (optional)**
**-**
**-**
**-**
**-**
**-**
**Fund to which**
**asset belongs**
**Cost (optional)**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**Fund to which**
**liability relates**
**Amount due**
**(optional)**
**-**
**-**
**-**
**-**
**-**
Print Name
MichelleWilliamson|**Endowment**
**funds**
**to nearest £**|
|---|---|---|---|
||||**-**|
||||**-**|
||||**-**|
||||**-**|
||||OK|
||||**Endowment**
**funds**
**to nearest £**|
||||**-**|
||||**-**|
||||**-**|
||||**-**|
||||**-**|
||||**-**|
||||**Current value**
**(optional)**|
||||**-**|
||||**-**|
||||**-**|
||||**-**|
||||**-**|
||||**Current value**
**(optional)**|
||||**-**|
||||**-**|
||||**-**|
||||**-**|
||||**-**|
||||**-**|
||||**-**|
||||**-**|
||||**-**|
||||**When due**
**(optional)**|
|||||
|||||
|||||
|||||
|||||
|||||
||||Date of
approval|
|||MichelleWilliamson|24-Dec-23|
|||||
CCXX R3 accounts (SS)
31/03/2024
3
CHARITY COMMISSION
FOR ENGLAND AND WALES
Independent examiner's
report on the accounts
Section A
Independent Examiner's Report
Report to the trusteesl
members of
idiopathic intracranial hypertension
On accounts for the year
ended
30th June 2023
Charity no
lif any)
1143522
Set out on pages
1and2
I report to the trustees on my examination of the accounts of the above
charity (Yhe Trust'l for the year ended 30 10612023.
Rgsponsibilities and As the charity trustees of the Trust, you are responsible for the preparation
basls of report of the accounts in accordance with the requirements of the Charities Act
2011 1"the Act").
I report in respect of my examination of the Trust's accounts carried out
under section 145 of the 2011 Act and in carying out my examination, I
have followed the applicable Directions given by the Charsty Commission
nder section 145151{b} of the Act.
I have completed my examination. I confirm that no material matters have
come to my attention lother than that disclosed below ') in connection with
the examination which gives me cause to believe that in. any material
respect..
accounting records were not kept in accordance with section 130 of
the Act or
the accounts do not accord with the accounting records
Independent
examiner's statement
I have no concerns and have come across no other matters in connection
with the exarnination lo which attention should be drawn in order to enable a
proper understanding of the accounts to be reached.
Please delete the words in the brackets if they do not apply.
Date:
Signed:
Name:
Brenda Binnie
Relevant professional
qualification{s) or body
(if any):
ACMA
Address:
9 Manor Cose
Dro1ICh
WR9 8HG
IER
October 2018
Section B
Oisclosure
Only complete it the examiner needs to highlight matters of concein Isee CC32.
Independent examination of charity accounts.. directions and guidance for
examiners).
Glv8 here brlef details of
any Items that the
8xaminer wishes to
disclose.
IER
October 2018
SwJned ty Dre or0 Irusts8s on behavof
all ttrUste•S
Synabjra
Pnnl N8me
Dats of approval