HUNTINGTON'S DISEASE
YOUTH ORGANIZATION
HDYO 2022
Year End Report
SUPPORT, EDUCATE, EMPOWER
## **A Letter from HDYO**
Dear HDYO Community,
As we prepare to say goodbye to 2022, we hope this letter finds you healthy, safe and happy. Each year, we take time to reflect on the impact that HDYO has on the thousands of young people and families we help. While the year’s stories are not quite completed, **we are excited to highlight some of our truly impactful successes and updates.**
We saw a shift in 2022 as the world transitioned back to in-person events. Nothing can replace the warm embraces and connections you get to make while seeing someone face to face. That did, however, encourage us to propel our in-person programs forward at a rapid pace while still serving the community through our unique programs.
## **2022 Impact Highlights**
- _Hosted our second International Young Adult Virtual Congress (483 participants)_
- _Expanded our Ambassadors of young people impacted by HD (62 Ambassadors)_
- _Solidified and enhanced partnerships with associations around the globe (20+)_
- _Released monthly Research Video Series in partnership with HD Buzz (11)_
- _Produced two new videos for Breaking Down Barriers and expanded to include casual conversations on social media_
- _Launched Stage 1 of JOIN-HD Global Registry_
- _Matched mentors and mentees together as a part of the Mentorship Program_
- _Co-Led 5 advisory board meetings as a part of HD-CAB_
- _Represented our community in several presentations across the globe_
- _**Continue to support young people through direct contact (impact numbers to be presented in January)**_
- _Welcomed new board members_
One of the major highlights was the development of our **Five Year Strategy** that shows the path forward for HDYO and how we can partner and collaborate with the global community.
As you read through this report, we hope that you feel the optimism and passion that the Huntington’s Disease Youth Organization has brought to our community. This is only possible with the tireless efforts of our team, and through the generosity of our volunteers and donors.
Thank you for your continued support to allow us to support, educate and empower young people impacted by HD.
Hayley Hubberstey, HDYO Chair
## **Table of Contents**
- Processes for Supporting Young People
- Support Example
- Quotes on the Some of the Impact of HDYO in 2022
- Mentorship Program Update
- Breaking Down Barriers
- Research Video Series
- International Young Adult Virtual Congress
- HDYO Ambassadors
- Huntington’s Disease Community Advisory Board
- Fundraisers
- HD Heroes
- Reputation Building
- Administrative Improvements
- Looking Ahead to 2023
- Investing in HDYO
## **In Their Own Words**
_**I started crying and crying until I became severely depressed. I didn't talk to anyone. My depression lasted for two months. I decided to send my story to HDYO. This was the best decision I made in my life. It changed my whole life. They told me not to be afraid and that they would help me find a doctor. They sent me the name of a doctor from Egypt. My thinking changed radically after I got to know HDYO and my thinking became positive about the disease.”**_
## _**Young Adult, Iraq**_
_**A life with HD has been incredibly tough to accept. Things have definitely been hard, and I don’t think I could have gotten to where I am today without the support of HDYO. I am so incredibly grateful for always being there if I need anything and for connecting me with so many other young people and a team of ambassadors who can truly understand everything a life impacted by HD brings. Young Adult, Wales**_
_**I’m so glad for the outreach. It’s hard adjusting to so many things. I never knew. Jenna is very sweet and kind. I think a lot about all that she and HDYO has done so far to help me. Such an amazing resource in my life.**_
_**Young Adult, US**_
_**HDYO has been a really positive experience and resource in my life. After getting in contact with them during Congress in 2022, everyone has been so welcoming and nice. They also have been there for me when I was down.**_
_**Young Adult, Scotland**_
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|||||
|---|---|---|---|
|2022 Financials & Impact|
|Total Income|$375,270|
|Total General & Administrative Expenses|$73,9391|
|Total Fundraising Expenses|$61,105|
|Total Expenses Dedicated to Programs|$212,537|
|HDYO UK Grants|$83,905|
|Mentorship|$15,485|
|Research Video Series|$6,446|
|General Programs (Ambassadors, etc)|$18,667|
|JOIN-HD Registry|$36,824|
|Congress|$19,496|
|Breaking Down Barriers|$16,443|
|Community Scholarships|$10,375|
|By the Numbers|
|As we moved into a full two years of virtual support and educational programs, we|
|found that out impact and reach extended well beyond what has been traditionally|
|known as key HDYO programs. We have seen our programs live on past inception|
|dates to truly make an impact in the HD community across the globe.|
|Outreach and Participants|
|�����������������|
|2021|2022|
|�������������|Registered Congress|
|Participants|685|465|
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|���|������������|Post Congress Participants|
|���|
|(YouTube)|6862|7309|
|������������|
|Online Educational|
|�����|Programs|16,928|46,551|
|���|
|Total Participants|24,471|54,325|
**----- End of picture text -----**
_This report details the main marketing presence. We are in the process of building up our LinkedIn and TikTok presence._
## **Twitter**
- Audience – Mainly scientific and professional
- 1.2K daily impressions
- 110K total impressions in 2022
- 6.2% increased engagement in 2022
- Most popular posts – research-based
## **Instagram**
- Audience – Young People
- Top Countries - 40% US, 21% UK
- Ages: 30% 25-34; 25% 35-44; 13% 18-24 & 45-54
- 48,600 Reach – 435% Increase
- 7,000 Profile Visits – 65% Increase
- Average Post Reach – 275
## **Facebook**
- Audience – Young People
- Top Countries - 31% US, 15% UK, 12%
- Ages: 36% 25-34; 21% 35-44; 16% 45-54
- 60,000 Page Reaches
- 76% Increase of Page Visits
- 12% Increase of Page Likes
## **Email**
- Total Email recipients - 79,000 (49,000 in 2021)
- Avg. Open Rate – 35.4% (2021 – 21%; Non-profit Avg – 25%)
- Avg. Click Rate/Email – 6.5% (2021 – 3%; Non-Profit Avg – 6%)
## **Partnership With**
In partnership with the HDSA, the mentorship program is designed to support young people across the United States who face the everyday challenges of growing up in a family affected by HD.
## **2022 Highlights**
## **In-Person Training**
- _Hosted training in Charlotte, North Carolina in October_
- _Brought back Mentors who were previously trained virtually and new mentors_
## **Recruitment**
- _Exhibited at HDSA Convention, Vanderbilt Symposium, and Help4HD Symposium_
- _Presented program at NYA Day_
- _Postcards sent to chapters to recruit during their events_
- _Increased social media presence_
## **Mentor Demographics**
- _Trained Mentors: 13 Mentors; Ages: 17-30; New Applications - 4_
- _All but one come from a family in which a parent has been diagnosed with HD_
- _One has a sibling diagnosed with JHD in addition to a parent with HD_
- _Variety of testing status and experiences (at risk, gene positive, gene negative)_
- _One mentor does not come from a family affected by HD but has a background in Neuroscience and has been an HD researcher for several years in a hospital setting bringing different perspectives and experience to the group_
## **Mentees**
- _Paired Mentees: 4; Mentees to be paired: 4; Mentees to be interviewed: 1_
## **Breaking Down Barriers**
HD is a complicated disease. We aim to provide educational resources in an easy-tounderstand format. We also help young people make connections and communicate with others about their experiences to help others.
Breaking Down Barriers was designed to tackle these roadblocks to arm young people and families with this information to help them throughout their journey.
HDYO continued this program with 2 more produced videos and the launch of our casual conversations around different barriers and stigmas.
- Participating in Research – We followed and documented two young people as they participated in Enroll-HD in England.
- Behind the Scenes Lab Tour – We followed a young person behind the scenes of a lab doing pre-clinical research to humanize the process and connect the scientific and advocacy communities. This was filmed in Michigan.
- Observational Studies – We hosted a conversation online with notable researchers and professionals who are instrumental in studies. That included Ed Wild, Jamie Levey, Jamie Hamilton, Karen Anderson, Shari Kinel and Lauren Byrne.
## **Future Projects Depending on Funding**
- Clinical Trial Myths – Delivery Methods
- Access to Trials
- Questions to Ask Your Doctor
- Speaking to Children about HD
- Quality Time with Symptomatic Loved Ones
- What is Gene Therapy
## **Special thanks to our sponsors!**
2022 has been a pivotal year for HD research with some highs and definite lows. This series continues to be one of the more popular resources we provide not only to educate but to also provide the hope through different research accomplishments. Our aim is to do monthly videos, but this is dependent on the different articles and topics published through HDBuzz. So far in 2022, we have created 10 videos with the 11[th] in production currently.
**Special thanks to our sponsors!**
**Special thanks to our partner!**
This year’s virtual HDYO Congress was a huge success! While our numbers were slightly lower than in 2021, we had a wider variety of attendees from more countries, and roughly half of the attendees had not participated in the 2021 event. We have also had continual views of our sessions and use these as an educational tools for our programs. These videos are also available in closed captioning in multiple languages. We improved the participant experience with chat rooms, social media wall, contests and more.
## Overall
## **Self-Identified Attendees**
- 1,300 session visits during the event.
- 483 Registered
- 5,317 total session views via YouTube (as of December 19)
- 40 Countries Represented
- 650 booth visits
## ������������
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Our Ambassadors celebrated their first full year in May. During that monthly meeting, notable community members shared their gratitude. That included Charles Sabine, Dr. Bonnie, Astri Arnesen (EHA), Seth Rotberg, BJ Viau and Jimmy Pollard. Several associations have expressed their want to partner and develop similar programs. Pharmaceutical companies have used their experiences to help educate their internal teams.
## **2022 Highlights**
- _Have reached a milestone of more than_ _**60 Ambassadors in 18 countries**_
- _Hosted monthly meetings_
- _Introduced them into helping with HDYO programs_
- _Expanded ambassadors from the US_
- _Created a training program to increase their knowledge and confidence being leaders in the community_
- _Shared 12 months of top tips, the most impactful being about symptom searching_
- _Hosted 10 social media take overs in the month of May to increase awareness. Each story was told in their own languages through videos and posts. Topics included: How did they find out about HD, How has HD impacted relationships, How do they cope, How have they become involved in the community, etc._
- _Hosted 5 social media takeovers in July for Rare Revolution Magazine_
- _Selected some ambassadors to serve as peer supporters on the HDYO Facebook Hangout Support Group_
- _Ambassadors presented at EHDN during HDYO’s sessions_
- _Prilenia featured some ambassadors in their May awareness campaign_
- _Secured a dedicated sponsorship from Teva_
**Special thanks to our sponsors!**
The European Huntington Association (EHA), the International Huntington Association (IHA) and the Huntington’s Disease Youth Organization (HDYO) officially launched HD-CAB in September 2021. As a coalition of partners, this group’s mission is to represent the voice of the global HD community and provide HD community experience to regulators, industry, researchers and governing bodies.
HD-CAB is an instrument to facilitate patient-oriented research and clinical trials as well as fair processes to make treatment accessible for all patients. For HDYO, its so important to have the young person’s voice heard as clinical trials look at early symptomatic and also presymptomatic patients.
In its first year, HD-CAB Boasts:
1. Recruited 26 members in 20 countries offering diverse relationships to HD
2. Provided training and education to advocates
**3. Hosted two virtual** (Novartis & PTC) and three in-person Advisory Boards (PTC, uniQure **and Annexon)**
**4. Pushed industry to** consider the global perspective and community access concerns
**5. Partnered with HSG** to help facilitate Annexon advisory board meeting
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I have been involved in the planning of many advisory board
meetings. It’s an important endeavor, but it’s always a lot of
work. Through their proactive approach, HD-CAB made it much
easier. They helped us understand how important it is to work
together and inspired us to keep moving forward. We at uniQure
came away with invaluable insights and got the chance to share
more of our work with the community we’re working for.
Daniel Leonard
uniQure
Partnered Organizations
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Fundraisers
3 Peaks Challenge
Raised ~£4,000
Jenna Runs a 10K
Grandpa Stamps
Raised $4,000
Holiday Cards
Raises ~$600 annually
Mt. Kilimanjaro Climbs
February 2023
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- Collection of 20+ community stories from across the globe.
- � Will be published in early 2022.
- � Forward is written by Charles Sabine.
- 50% of proceeds will be donated to HDYO.
- Charles will do book signing at Congress.
- HDYO has a chapter that Jenna wrote.
- Many Ambassadors are featured.
## **2022 Highlights**
- _Officially launched Stage 1 in February 2022_
- _69 families pre-registered_
- _45 fully enrolled_
- _Presented posters and sessions at several conferences globally: HSG, EHDN, HDSA, CHDI, Congress, HDA JHD Weekend, ECRD, Hereditary Disease Foundation, UK HD Network Meeting_
- _Developed family advisory board_
- _Launching new platform for Stage 2_
- _Created Social Media JOIN-HD support page_
- _Added new members to Scientific Oversight Committee_
- _Launched JOIN-HD.org_
## **Current Data**
**Desire for Wider Support Network**
## **HDYO Team:**
## **Scientific Oversight Committee**
**Lauren Byrne Bonnie Hennig-** _JOIN-HD Chief_ **Trestman Martha Nance Jean-Marc Burgunder** _Investigator HDYO Research Co-Chair_
**Oliver Quarrell**
**Helen Benjamin Wilfond Santini**
**Leon Dure**
**Jenna Heilman Kelly Atkins** _HDYO Executive HDYO Research Director Co-Chair_
**Peg Ferdinando Nopoulos Squitieri**
**Lauren Youngborg** _HDYO Education Co-Chair_
## **Special thanks to our sponsors!**
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## **First In-Person HDYO International Congress**
Planning is well underway for the first ever in-person Congress held in Glasgow, Scotland. Scholarship recipients from 2020 are carried over to this event, and we are currently finalizing sponsors, logistics, and activities. Highlights include Enroll-HD hosting a celebration event the Saturday of Congress for their 10-year anniversary.
## **STRIVE – S** upporting and **TR** aining **I** nternational **V** oices to **E** xcel
As the dedicated advocate for young people impacted by HD, we have a responsibility to champion support needed for professionals helping youth and young people across the globe. This network would pool resources & provide support (not financially) for the international programs. That includes:
- Organizing a library of materials & resources
- Convening professionals for peer support
- Providing Continuing Education
- Encouraging global collaborations
- Developing a Database of Service Providers
## **Survey Series**
The need and manner in which the HD community searches for & receives resources has been greatly impacted by the pandemic. In addition, there is a lot that we need to further understand for how HD impacts a young person’s journey throughout the major milestones in their life. We will be implementing a series of surveys to help in certain key areas & we are currently finalizing our IRB approval and hope to start dissemination in February and at Congress. This information will be published to train professionals on effective outreach methods.
## **Camps**
The flagship program of HDYO has been camps. We will aim to host camps every other year in a different country starting in North America in 2024. Planning has already begun for this event and will continue full-speed in 2023.
Next Steps:
- _Engage and collaborate with local associations_
- _Logistics_
- _Create planning committees to help with organization_
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Full-Time
8 Hours/Week 4 Hours/Week
Education & Advocacy Committee
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## **Research Volunteer Committee**
## **Misty Daniel**
_Certified Clinical Research Coordinator, Scripps Health_
## **Dr. Beth Ann Griffin**
_Senior Statistician, RAND Center for Causal Inference_
## **Mustafa Mehkary**
_PhD Student, University of Toronto_
## **Marina Papoutsi**
_Biomarker Scientist, IXICO plc, Honorary senior research fellow, UCL_
## **Bhairavi Srinageshwar**
_Post-Doc Research Associate_
## **Education Volunteer Committee**
## **Erika Brockhoff**
_Prenatal Genetic Counselor, Impacted by HD_
**Bhairavi Srinageshwar** _Post-Doc Research Associate_
## **Brittany Stowers**
_Neuroscience and Psychology, Impacted by HD_
## **Dr. Emma Yhnell**
_HD Researcher, Cardiff University_
## **Jessi Way**
_Licensed Professional Counselor, Impacted by HD_
## **Wes Solem**
_Genetic Counselor, HD Genetics_
**Charity Registration No. 1145781**
**Company Registration No. 07821651 (England and Wales)**
# **HUNTINGTON'S DISEASE YOUTH ORGANISATION LTD ANNUAL REPORT AND UNAUDITED FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 DECEMBER 2022**
## **HUNTINGTON'S DISEASE YOUTH ORGANISATION LTD**
## **LEGAL AND ADMINISTRATIVE INFORMATION**
## **Trustees**
C Braithwaite L Byrne B L Hennig-Trestman Dr H E Hubberstey A Clarke J Harte K Atkins J Strydom T Randall L Youngborg M Shore
(Appointed 17 August 2022) (Appointed 27 July 2022) (Appointed 27 July 2022) (Appointed 27 July 2022) (Appointed 27 July 2022)
**Secretary** Mr M J Ellison
**Charity number** 1145781 **Company number** 07821651 **Registered office** 28 Millais Close Bedworth Warwickshire CV12 8TH **Independent examiner** Helen Furlong FCCA McLintocks (NW) Limited 46 Hamilton Square Birkenhead Wirral Merseyside CH41 5AR
## **HUNTINGTON'S DISEASE YOUTH ORGANISATION LTD**
## **CONTENTS**
||**Page**|
|---|---|
|Trustees' report|1 - 2|
|Independent examiner's report|3|
|Statement of financial activities|4|
|Balance sheet|5|
|Notes to the financial statements|6 - 11|
## **HUNTINGTON'S DISEASE YOUTH ORGANISATION LTD**
## **TRUSTEES' REPORT (INCLUDING DIRECTORS' REPORT)** _**FOR THE YEAR ENDED 31 DECEMBER 2022**_
The trustees present their annual report and financial statements for the year ended 31 December 2022.
The financial statements have been prepared in accordance with the accounting policies set out in note 1 to the financial statements and comply with the charity's Memorandum and Articles of Association, the Companies Act 2006 and "Accounting and Reporting by Charities: Statement of Recommended Practice applicable to charities preparing their accounts in accordance with the Financial Reporting Standard applicable in the UK and Republic of Ireland (FRS 102)" (effective 1 January 2019).
## **Objectives and activities**
The charity's objects are to relieve the need of young people impacted by Huntington's Disease in particularly, but not exclusively, by the provision of information and support.
The trustees have paid due regard to guidance issued by the Charity Commission in deciding what activities the charity should undertake.
## **Achievements and performance**
During the year to 31 December 2022 the organisation continued with the following educational programmes:
- JOIN-HD The juvenile-Onset Initiative for Huntington's disease - A Global Registry to connect the community of those affected by JOHD, increasing the understanding of the disease & encouraging future research
- Youth Mentorship Program. This program provides a young person (mentee) with one to one time with another person (mentor) who will receive training & ongoing support
- International Ambassadors - Young people who bring real-life experiences to better advocate for the entire community.
- Research Video Series - In partnership with HD Buzz, we develop frequent videos to showcase the latest news in HD research.
- Breaking Down Barriers Series - We tackle the stigmas surrounding HD.
- Young Adult Virtual Congress - This was held in March 2022 and had 483 participants globally.
## **Financial review**
In the year to 31 December 2022 the charity had incoming resources of £83,097 (2021 £104,120) and expenditure of £75,809 (2021 £85,466) giving a surplus of £7,288 (2021 £18,654). Accumulated unrestricted free reserves at 31 December 2022 amounted to £49,971.
It is the policy of the charity that unrestricted funds which have not been designated for a specific use should be maintained at a level equivalent to between three and six month’s expenditure. The trustees consider that reserves at this level will ensure that, in the event of a significant drop in funding, they will be able to continue the charity’s current activities while consideration is given to ways in which additional funds may be raised. This level of reserves has been maintained throughout the year.
## **Structure, governance and management**
The charity is a company limited by guarantee and is governed by the Memorandum and Articles of Association.
- 1 -
## **HUNTINGTON'S DISEASE YOUTH ORGANISATION LTD**
## **TRUSTEES' REPORT (INCLUDING DIRECTORS' REPORT) (CONTINUED)** _**FOR THE YEAR ENDED 31 DECEMBER 2022**_
The trustees, who are also the directors for the purpose of company law, and who served during the year and up to the date of signature of the financial statements were:
C Braithwaite L Byrne B L Hennig-Trestman Dr H E Hubberstey E Miller (Resigned 30 September 2022) R Schaffrath (Resigned 30 October 2022) D Spencer (Resigned 30 December 2022) A Clarke J Harte K Atkins (Appointed 17 August 2022) J Strydom (Appointed 27 July 2022) T Randall (Appointed 27 July 2022) L Youngborg (Appointed 27 July 2022) M Shore (Appointed 27 July 2022)
None of the trustees has any beneficial interest in the company. All of the trustees are members of the company and guarantee to contribute £10 in the event of a winding up.
**The trustees** ' **report was** approved by the Board of Trustees.
. **............................. Dr H E Hubberstey Trustee**
## 26/9/23
Date: .............................................
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## **HUNTINGTON'S DISEASE YOUTH ORGANISATION LTD**
## **INDEPENDENT EXAMINER'S REPORT**
## **TO THE TRUSTEES OF HUNTINGTON'S DISEASE YOUTH ORGANISATION LTD**
I report to the trustees on my examination of the financial statements of Huntington's Disease Youth Organisation Ltd (the charity) for the year ended 31 December 2022.
## **Responsibilities and basis of report**
As the trustees of the charity (and also its directors for the purposes of company law) you are responsible for the preparation of the financial statements in accordance with the requirements of the Companies Act 2006 (the 2006 Act).
Having satisfied myself that the financial statements of the charity are not required to be audited under Part 16 of the 2006 Act and are eligible for independent examination, I report in respect of my examination of the charity’s financial statements carried out under section 145 of the Charities Act 2011 (the 2011 Act). In carrying out my examination I have followed all the applicable Directions given by the Charity Commission under section 145(5)(b) of the 2011 Act.
## **Independent examiner's statement**
I have completed my examination. I confirm that no matters have come to my attention in connection with the examination giving me cause to believe that in any material respect:
- 1 accounting records were not kept in respect of the charity as required by section 386 of the 2006 Act; or
- 2 the financial statements do not accord with those records; or
- 3 the financial statements do not comply with the accounting requirements of section 396 of the 2006 Act other than any requirement that the accounts give a true and fair view which is not a matter considered as part of an independent examination; or
- 4 the financial statements have not been prepared in accordance with the methods and principles of the Statement of Recommended Practice for accounting and reporting by charities applicable to charities preparing their accounts in accordance with the Financial Reporting Standard applicable in the UK and Republic of Ireland (FRS 102).
I have no concerns and have come across no other matters in connection with the examination to which attention should be drawn in this report in order to enable a proper understanding of the financial statements to be reached.
## **Helen Furlong FCCA McLintocks (NW) Limited**
46 Hamilton Square Birkenhead Wirral Merseyside CH41 5AR
Dated: .........................
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## **HUNTINGTON'S DISEASE YOUTH ORGANISATION LTD**
## **STATEMENT OF FINANCIAL ACTIVITIES INCLUDING INCOME AND EXPENDITURE ACCOUNT**
## _**FOR THE YEAR ENDED 31 DECEMBER 2022**_
|||||**Unrestricted **|**Unrestricted**|
|---|---|---|---|---|---|
|||||**funds**|**funds**|
|||||**2022**|**2021**|
||||**Notes**|**£**|**£**|
|**Income from:**||||||
|Donations and legacies|||**3**|19,442|13,458|
|Charitable activities|||**4**|63,655|90,606|
|Other trading activities|||**5**|-|56|
|||||||
|**Total income**||||83,097|104,120|
|||||||
|**Expenditure on:**||||||
|Charitable activities|||**6**|75,809|85,466|
|||||||
|**Net income for the year/**||||||
|**Net movement in funds**||||7,288|18,654|
|Fund balances|at 1 January 2022|||42,683|24,029|
|||||||
|**Fund balances at 31 December 2022**||||49,971|42,683|
The statement of financial activities includes all gains and losses recognised in the year.
All income and expenditure derive from continuing activities.
The statement of financial activities also complies with the requirements for an income and expenditure account under the Companies Act 2006.
- 4 -
## **HUNTINGTON'S DISEASE YOUTH ORGANISATION LTD**
## **BALANCE SHEET**
## _**AS AT 31 DECEMBER 2022**_
|||**2022**||**2021**||
|---|---|---|---|---|---|
||**Notes**|**£**|**£**|**£**|**£**|
|**Current assets**||||||
|Debtors|**11**|7,086||-||
|Cash at bank and in hand||44,085||43,883||
|||||||
|||51,171||43,883||
|**Creditors: amounts falling due within**||||||
|**one year**|**12**|(1,200)||(1,200)||
|||||||
|Net current assets|||49,971||42,683|
|||||||
|||||||
|**Income funds**||||||
|Unrestricted funds|||49,971||42,683|
|||||||
||||49,971||42,683|
The company is entitled to the exemption from the audit requirement contained in section 477 of the Companies Act 2006, for the year ended 31 December 2022.
The directors acknowledge their responsibilities for complying with the requirements of the Companies Act 2006 with respect to accounting records and the preparation of financial statements.
The members have not required the company to obtain an audit of its financial statements for the year in question in accordance with section 476.
These financial statements have been prepared in accordance with the provisions applicable to companies subject to the small companies regime.
**The financial statement** s were approved by the Trustees on .........................26/9/23
**.............................. D** r **H E H** u **bb** ers **t** ey **Trustee**
## **Company registration number 07821651**
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## **HUNTINGTON'S DISEASE YOUTH ORGANISATION LTD**
## **NOTES TO THE FINANCIAL STATEMENTS** _**FOR THE YEAR ENDED 31 DECEMBER 2022**_
## **1 Accounting policies**
## **Charity information**
Huntington's Disease Youth Organisation Ltd is a private company limited by guarantee incorporated in England and Wales. The registered office is 28 Millais Close, Bedworth, Warwickshire, CV12 8TH.
## **1.1 Accounting convention**
The financial statements have been prepared in accordance with the charity's [governing document], the Companies Act 2006, FRS 102 “The Financial Reporting Standard applicable in the UK and Republic of Ireland” (“FRS 102”) and the Charities SORP "Accounting and Reporting by Charities: Statement of Recommended Practice applicable to charities preparing their accounts in accordance with the Financial Reporting Standard applicable in the UK and Republic of Ireland (FRS 102)" (effective 1 January 2019). The charity is a Public Benefit Entity as defined by FRS 102.
The charity has taken advantage of the provisions in the SORP for charities not to prepare a Statement of Cash Flows.
The financial statements are prepared in sterling, which is the functional currency of the charity. Monetary amounts in these financial statements are rounded to the nearest £.
The financial statements have been prepared under the historical cost convention. The principal accounting policies adopted are set out below.
## **1.2 Going concern**
At the time of approving the financial statements, the trustees have a reasonable expectation that the charity has adequate resources to continue in operational existence for the foreseeable future. Thus the trustees continue to adopt the going concern basis of accounting in preparing the financial statements.
## **1.3 Charitable funds**
Unrestricted funds are available for use at the discretion of the trustees in furtherance of their charitable objectives.
Restricted funds are subject to specific conditions by donors as to how they may be used. The purposes and uses of the restricted funds are set out in the notes to the financial statements.
## **1.4 Income**
Income is recognised when the charity is legally entitled to it after any performance conditions have been met, the amounts can be measured reliably, and it is probable that income will be received.
Cash donations are recognised on receipt. Other donations are recognised once the charity has been notified of the donation, unless performance conditions require deferral of the amount. Income tax recoverable in relation to donations received under Gift Aid or deeds of covenant is recognised at the time of the donation.
Legacies are recognised on receipt or otherwise if the charity has been notified of an impending distribution, the amount is known, and receipt is expected. If the amount is not known, the legacy is treated as a contingent asset.
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## **HUNTINGTON'S DISEASE YOUTH ORGANISATION LTD**
## **NOTES TO THE FINANCIAL STATEMENTS (CONTINUED)** _**FOR THE YEAR ENDED 31 DECEMBER 2022**_
## **1 Accounting policies**
## **(Continued)**
## **1.5 Expenditure**
Expenditure is recognised once there is a legal or constructive obligation to transfer economic benefit to a third party, it is probable that a transfer of economic benefits will be required in settlement, and the amount of the obligation can be measured reliably.
Expenditure is classified by activity. The costs of each activity are made up of the total of direct costs and shared costs, including support costs involved in undertaking each activity. Direct costs attributable to a single activity are allocated directly to that activity. Shared costs which contribute to more than one activity and support costs which are not attributable to a single activity are apportioned between those activities on a basis consistent with the use of resources. Central staff costs are allocated on the basis of time spent, and depreciation charges are allocated on the portion of the asset’s use.
## **1.6 Cash and cash equivalents**
Cash and cash equivalents include cash in hand, deposits held at call with banks, other short-term liquid investments with original maturities of three months or less, and bank overdrafts. Bank overdrafts are shown within borrowings in current liabilities.
## **1.7 Financial instruments**
The charity has elected to apply the provisions of Section 11 ‘Basic Financial Instruments’ and Section 12 ‘Other Financial Instruments Issues’ of FRS 102 to all of its financial instruments.
Financial instruments are recognised in the charity's balance sheet when the charity becomes party to the contractual provisions of the instrument.
Financial assets and liabilities are offset, with the net amounts presented in the financial statements, when there is a legally enforceable right to set off the recognised amounts and there is an intention to settle on a net basis or to realise the asset and settle the liability simultaneously.
## _**Basic financial assets**_
Basic financial assets, which include debtors and cash and bank balances, are initially measured at transaction price including transaction costs and are subsequently carried at amortised cost using the effective interest method unless the arrangement constitutes a financing transaction, where the transaction is measured at the present value of the future receipts discounted at a market rate of interest. Financial assets classified as receivable within one year are not amortised.
## _**Basic financial liabilities**_
Basic financial liabilities, including creditors and bank loans are initially recognised at transaction price unless the arrangement constitutes a financing transaction, where the debt instrument is measured at the present value of the future payments discounted at a market rate of interest. Financial liabilities classified as payable within one year are not amortised.
Debt instruments are subsequently carried at amortised cost, using the effective interest rate method.
Trade creditors are obligations to pay for goods or services that have been acquired in the ordinary course of operations from suppliers. Amounts payable are classified as current liabilities if payment is due within one year or less. If not, they are presented as non-current liabilities. Trade creditors are recognised initially at transaction price and subsequently measured at amortised cost using the effective interest method.
## _**Derecognition of financial liabilities**_
Financial liabilities are derecognised when the charity’s contractual obligations expire or are discharged or cancelled.
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## **HUNTINGTON'S DISEASE YOUTH ORGANISATION LTD**
## **NOTES TO THE FINANCIAL STATEMENTS (CONTINUED)** _**FOR THE YEAR ENDED 31 DECEMBER 2022**_
## **1 Accounting policies**
**(Continued)**
## **1.8 Employee benefits**
The cost of any unused holiday entitlement is recognised in the period in which the employee’s services are received.
Termination benefits are recognised immediately as an expense when the charity is demonstrably committed to terminate the employment of an employee or to provide termination benefits.
## **1.9 Retirement benefits**
Payments to defined contribution retirement benefit schemes are charged as an expense as they fall due.
## **2 Critical accounting estimates and judgements**
In the application of the charity’s accounting policies, the trustees are required to make judgements, estimates and assumptions about the carrying amount of assets and liabilities that are not readily apparent from other sources. The estimates and associated assumptions are based on historical experience and other factors that are considered to be relevant. Actual results may differ from these estimates.
The estimates and underlying assumptions are reviewed on an ongoing basis. Revisions to accounting estimates are recognised in the period in which the estimate is revised where the revision affects only that period, or in the period of the revision and future periods where the revision affects both current and future periods.
## **3 Donations and legacies**
||**Unrestricted **|**Unrestricted**|
|---|---|---|
||**funds**|**funds**|
||**2022**|**2021**|
||**£**|**£**|
|Donations and gifts|19,442|13,458|
## **4 Charitable activities**
||**2022**|**2021**|
|---|---|---|
||**£**|**£**|
|Grants received|63,655|90,606|
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## **HUNTINGTON'S DISEASE YOUTH ORGANISATION LTD**
## **NOTES TO THE FINANCIAL STATEMENTS (CONTINUED)** _**FOR THE YEAR ENDED 31 DECEMBER 2022**_
## **5 Other trading activities**
||**Total **|**Unrestricted**|**Unrestricted**|
|---|---|---|---|
||||**funds**|
||**2022**||**2021**|
||**£**||**£**|
|Events|-||56|
|||||
|||||
|**Charitable activities**||||
||**2022**||**2021**|
||**£**||**£**|
|Mentorship project costs|1,116||3,122|
|Research video costs|3,785||4,963|
|JOIN - HD costs|127||-|
|Breaking Down Barriers costs|2,830||-|
|Virtual Congress costs|11,023||-|
|||||
||18,881||8,085|
|Share of support costs (see note 7)|55,728||76,181|
|Share of governance costs (see note 7)|1,200||1,200|
|||||
||75,809||85,466|
**6 Charitable activities**
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## **HUNTINGTON'S DISEASE YOUTH ORGANISATION LTD**
## **NOTES TO THE FINANCIAL STATEMENTS (CONTINUED)** _**FOR THE YEAR ENDED 31 DECEMBER 2022**_
## **7 Support costs**
|**Support costs**|||||||||||||
|---|---|---|---|---|---|---|---|---|---|---|---|---|
||**Support**||
**Governance**|||**2022**Support costs|||Governance|||2021|
|||**costs**||**costs**||||||costs|||
|||**£**||**£**||**£**||£||£||£|
|Staff costs||31,436||-||31,436||47,785||-||47,785|
|Conference costs||-||-||-||10,966||-||10,966|
|Website costs||8,760||-||8,760||10,139||-||10,139|
|IT costs||3,302||-||3,302||1,967||-||1,967|
|Travel and accomodation||-||-||-||531||-||531|
|Printing, postage and|||||||||||||
|stationery||186||-||186||1,673||-||1,673|
|Advertising||618||-||618||673||-||673|
|Professional fees||6,234||-||6,234||1,460||-||1,460|
|Administration expenses||531||-||531||884||-||884|
|Bank charges||279||-||279||103||-||103|
|Accountancy and payroll|||||||||||||
|costs||4,382||-||4,382||-||-||-|
|Independent examination|||||||||||||
|fees||-||1,200||1,200||-||1,200||1,200|
||||||||||||||
|||55,728||1,200||56,928||76,181||1,200||77,381|
||||||||||||||
||||||||||||||
|Analysed between|||||||||||||
|Charitable activities||55,728||1,200||56,928||76,181||1,200||77,381|
## **8 Trustees**
None of the trustees (or any persons connected with them) received any remuneration or benefits from the charity during the year.
## **9 Employees**
The average monthly number of employees during the year was:
|||**2022**||**2021**|
|---|---|---|---|---|
||**Number**||**Number**||
|||2||2|
||||||
||||||
|**Employment costs**||**2022**||**2021**|
|||**£**||**£**|
|Wages and salaries||31,246||47,223|
|Other pension costs||190||562|
||||||
|||31,436||47,785|
There were no employees whose annual remuneration was more than £60,000.
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## **HUNTINGTON'S DISEASE YOUTH ORGANISATION LTD**
## **NOTES TO THE FINANCIAL STATEMENTS (CONTINUED)** _**FOR THE YEAR ENDED 31 DECEMBER 2022**_
## **10 Taxation**
The charity is exempt from tax on income and gains falling within section 505 of the Taxes Act 1988 or section 252 of the Taxationof Chargeable Gains Act 1992 to the extent that these are applied to its charitable objects.
## **11 Debtors**
|**11**|**Debtors**||||
|---|---|---|---|---|
|||**2022**||**2021**|
||**Amounts falling due within one year:**|**£**||**£**|
||Other debtors|6,598||-|
||Prepayments and accrued income|488||-|
||||||
|||7,086||-|
||||||
||||||
|**12**|**Creditors: amounts falling due within one year**||||
|||**2022**||**2021**|
|||**£**||**£**|
||Accruals and deferred income|1,200||1,200|
## **13 Related party transactions**
There were no disclosable related party transactions during the year (2021 - none).
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