J/
HUNTINGTON'S DISEASE
YOUTH ORGANIZATION
2021
Annual Report
SUPPORT, EDUCATE, EMPOWER


## **Commitment to Our Mission** 

The Huntington’s Disease Youth Organization is an international non-profit supporting, educating, and empowering young people up to 35 years, impacted by Huntington’s Disease (HD). 

Our aim is to provide a safe place to **support, educate & empower** young people & their families. We do this through several online and in-person resources. 

## Who We Help: 

HD impacts far more people than just those who have the disease. Impacted for us includes - 

- At risk for HD 

- Young person gene tested with a positive or negative result 

- Diagnosed with HD or JoHD 

- Those not at risk who have family, loved ones, friends with HD 

- Caregivers who may/may not be at risk 

- People who know someone with HD 

- Learning about HD for educational purposes 

- Feeling concerned about HD for any reason 

HDYO.org – The center of our support & education. 14 languages & huge range of content for different ages. Nov 2021, we launched our new redesigned website with the new branding & enhanced navigation. 

Direct support is provided by our staff. 

## **Educational Programs** 

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. HDYO International Congress - A program of insightful talks, sharing, research updates, peer support & fun! Youth Mentorship Program in Partnership with HDSA - This program provides a young person (mentee) with one-on-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 HDYou Community Stories - Featured interviews with members of the HD community. 



## **Support** 



HD impacts each person differently, and this can lead to worry and uncertainty. HDYO is there to answer any questions from the community. There are a wide range of resources available. We help young people access peer support and connect to professionals in the community. 





## **Enhanced Website Navigation & Support** 



## **From the Community** 




## **Youth Mentorship/Mentee Program** 

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. This program provides youth (mentee) with one-on-one time with another person (mentor) who will receive training, and ongoing support from a Youth Social Worker within the HDSA. We are actively accepting applications for mentors and mentees to expand this program future after our pilot. 

## **In Partnership With** 


**----- Start of picture text -----**<br>
HD.<br>**----- End of picture text -----**<br>





**----- Start of picture text -----**<br>
Bhairavi<br>Mentor - Michigan<br>**----- End of picture text -----**<br>



## **HDYO Impact By the Numbers** 

**Event Participation** 


**----- Start of picture text -----**<br>
Website, Email &   %$$"!'#%$&<br>Program Connections 1++<br>4222 /++<br>3522 $.2-) #'/0.-<br>" ' .++<br>3222 !&2+104#%/'-10<br>!$' $"' -++<br>522 "%,*+3 5 "/*'-&0<br>2 !#' #/.('00*.-%+0 +<br>#-0$* "1+%'. -( !-,,'&0)-,/  !&(#"#%!$('<br>4236 4242 4243 -+,0 -+,1 -+,2 -+-+ -+-,<br>**----- End of picture text -----**<br>








## **Educate** 

HDYO strives to educate and provide resources for the community to support them through every part of their journey with Huntington’s Disease. In addition to the robust content on HDYO.org, a series of programs have been developed to bring important topics and concerns directly to young people. 








## **Breaking Down Barriers Series** 

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. 

**Next Up in 2022** ...Talking to Children about HD, Access to Health & Research, Being a Young Caregiver, Behind the Scenes Laboratory Tour, Speaking to Children About HD. 




**Sponsored By** 


## **Matt’s Chats** 

Featured on social media, Matt’s Chats featured interviews with others in the HD community to discuss topics like juvenile onset HD, deciding to do genetic testing, latest in research and more. 







## **Research Video Series** 


## **Special thanks to our sponsors!** 



**Special thanks to our partner!** 






## **International Young Adult Congress** 

The HD community is incredibly diverse. There are vast discrepancies with the level and access of care, support and resources that are available, depending on your country and culture. HDYO has the unique ability to help young people across the world impacted by HD. We aimed to do that physically with our event in 2020. After re-imagining the original event to become virtual, HDYO hosted the first International Congress in March 2021. 

This was the FIRST event of its kind because it brought together the HD community across the world in one place, virtually. Attendees heard from different research partners, learned from people in the community, got moving with yoga, dance and exercises, connected with others and walked away feeling inspired. All sessions are featured on YouTube for anyone to access at any time. This essential program was completely free for the community thanks to the generosity of our amazing sponsors.  Feedback from young people in addition to pharmaceutical sponsors was extremely positive and 98% of respondents to our survey were excited to join another virtual congress in the next year. 






## **Empower** 

At HDYO, our aim is to ensure all young people impacted by HD are empowered to help themselves and their families. We encourage them to be their own advocates by sharing their stories and connecting with others in the community. 


**----- Start of picture text -----**<br>
Clare raised funds by running a half marathon.<br>**----- End of picture text -----**<br>





## **HDYO Ambassadors** 


Our Ambassadors are a group of young people from across the world who are leaders and advocates in the HD community and can help us extend our reach being boots locally on the ground. This group volunteers, raises awareness of HD, advises and fundraises for HDYO. They are truly global coming from US, Canada, South America, Europe, Australia and the Middle East. This group launched after the success of congress in 2021 and meet monthly. They share their experiences and aim to connect the HD community to show they are not alone. They provide support to community members throughout the year including sharing Top Tips to help others, outlining their own journeys, and more. They also keep their fingers on the pulse of the latest in HD and the impacts on young people. 


**----- Start of picture text -----**<br>
Meet Some of Our Ambassadors!<br>Some Ambassadors Not Photographed<br>**----- End of picture text -----**<br>













## **Huntington’s Disease Community Advisory Board (HD-CAB)** 

The European Huntington Association (EHA), the International Huntington Association (IHA) and the Huntington’s Disease Youth Organization (HDYO) officially launched their new project, HD-CAB. As a coalition of partners, their 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 treat** ment accessible for all patients. For HDYO its so important to have **the young persons voice** heard as clinical trials look at early symptomatic and **pre-symptomatic patien** ts. 

Hayley Hubberstey, HDYO Chair and Member of HD-CAB Management Team 

## **Partnered Organizations** 






## **New Ways of Engagement** 

There are countless ways to give back and make your voice heard and represented in the HD community. HDYO has enhanced the various ways to give back to HDYO and to the community. These tactics will help diversify our methods of support while enhancing our mission. 

## **Ways to Give** 

**Personal Donations!** Supporters can give monthly or monthly and can choose to donate in honor of a loved one. 

**Donate in Lieu of Gifts!** For the next celebration or in memory of a loved one, people can make a donation and choose to send a gift receipt to a loved one. 

Start a Facebook Fundraiser! This is the perfect way to celebrate a birthday or milestone while giving back! **Host Your Own Fundraiser!** From bake sales to bowling nights, to online parties and quizzes, there are may fun ways to **Henley Mermaids Fundraiser** gather to have fun and support HDYO. 

**Participate on Behalf of HDYO!** Make HDYO the beneficiary for your next marathon or competition! 

**Get Your Workplace Involved!** Whether you’re an employee or an employer, we’d be happy to chat about making HDYO an approved charity for your workplace giving programs. There are three main ways for employers to support nonprofits: payroll deductions, grant opportunities and matching gifts. 

**Make HDYO Your Beneficiary!** From 401ks to IRAs and other investment accounts, you can make HDYO your beneficiary. 

**Become A Sponsor** Your foundation or company can sponsor our programs that impact the lives of young people and families in the HD community globally. We also offer unique and custom sponsorship opportunities that allow companies and organizations to share their products and services, reach thousands of individuals and enhance their presence in the HD community. 

**Volunteer!** From becoming an Ambassador to joining one of our committees, YOU can help so many others who have been impacted by this disease. 










The HDYO team made great strides in our global Juvenile-onset HD Global Registry. This registry hopes to connect this under-served community and gather history to help support and direct future research for Juvenile onset Huntington’s Disease. 

## **2021 Highlights** 

- _Hired Dr. Rebecca Mason, a dedicated part-time coordinator to manage the registry_ 

- _Convened the Scientific Oversight Committee_ 

- _Formed the Family Advisory Council_ 

- _Pre-registered 32 families in 10 countries_ 

- _Presented posters and sessions at 4 conferences to share data and information including HDS Family Day, EHDN, Help 4 HD and Congress._ 

- _Finalized Participant Experience_ 

- _Created study documents_ 

- _Enhanced registry portal_ 

- _Funded 3 families to attend Help 4 HD Conference_ 

## **Presented At:** 




## **Awarded Scholarships:** 









## **HDYO Team: Scientific Oversight Committee** 


**----- Start of picture text -----**<br>
Lauren Byrne<br>JOIN-HD Chief  Oliver<br>Investigator Martha Nance Jean-Marc Burgunder Quarrell<br>Bonnie Hennig-<br>Trestman<br>HDYO research<br>co-chair<br>Helen<br>Leon Dure Santini Benjamin Wilfond<br>Rebecca Mason<br>JOIN-HD<br>coordinator<br>**----- End of picture text -----**<br>


## **What’s Next?** 

The registry will open and active recruitment will begin in the first months of 2022. Any family who has been impacted by juvenile-onset HD is encouraged to register to help connect the community together, identify unmet needs and gaps in care, and to help speed up research for this important community. Once registered, participants will go through a screening call with Dr. Mason and then will receive log in information to complete a series of questionnaires. For more questions and information, email registry@hdyo.org. 


**----- Start of picture text -----**<br>
Special thanks to our sponsors!<br>**----- End of picture text -----**<br>



**----- Start of picture text -----**<br>
Pre-Register Today!<br>**----- End of picture text -----**<br>








INC(hME
Donations
Grants
16,996.06
130,514.18
23,829.66
179,530.25
147,510.24
203,359.91
EXPENDITURE
Grantsto HDYO UK
Salaries
Payroll costs
Storage
Postage & statlonery
ITcosts
92,509.16
34,832.98
242.57
112.05
172.13
125,000.00
47.919.73
333.70
154.15
236.80
562.17
773.38
Telephone
Insurance
171.94
236.54
728.63
1,002.38
173.04
Bank charges
Office costs
Accounts
125.78
599.17
1.987.43
824.28
2.750.00
132.044.01
179A03.99
Surplus for Year
15,466.23
23,955.92
Reserves B/F
Surplus
236.886.04
23,955.92
Reserves CIF
REPRESENTED BY :ASSErs
260,841.96
Checkin8 BankAccount
Stocks
260,341.96
500.00





## **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_ 

## **Marketing Volunteer Committee** 

## **Education Volunteer Committee** 

## **Angela Abell** 

HDYO Ambassador, Impacted by HD 

## **Erika Brockhoff** 

_Prenatal Genetic Counselor, Impacted by HD_ 

## **Marc Osborn** 

_High School Teacher, Impacted by HD_ 

## **Bhairavi Srinageshwar** 

_Post-Doc Research Associate_ 

**Brittany Stowers** _Student Studying Neuroscience and Psychology, Impacted by HD_ 

## **Dr. Emma Yhnell** 

_HD Researcher, Cardiff University_ 

**Emily Hadley** _Retail Buyer, World of Sweets_ 

## **Jessi Way** 

_Masters of Science, Licensed Professional Counselor, Impacted by HD_ 



HUNTINGTON'S DISEASE
YOUTH ORGANIZATION
Join the Celebration in
20221
HDYouthOrg
in
@HDYO
HDYOFeed
@HDYOFeed
HDYOFeed
HDYO.ORG

Charfty Reglstration No. 1145781
Company Registration No. 07821651 IEngland and Wales)
HUNTINGTON'S DISEASE YOUTH ORGANISATION LTD
ANNUAL REPORT AND UNAUDITED FINANCIAL STATEMENTS
FOR THE YEAR ENDED 31 DECEMBER 2021
McLintocks
Xeinadin Group

HUNTINGTON'S DISEASE YOUTH ORGANISATION LTD
LEGAL AND ADMINISTRATIVE INFORMATION
Trustees
C Brailhwaile
L Brynne
H Ging
B L Hennig-Treslman
Or H E Hubb&isley
C Martin
U McNamara
E Miller
R Schaffrath
D Spencer
A Weiser
Secretary
Mr M J Ellison
Charity numbèr
1145781
Company number
07821651
Regist&rèd offi¢e
28 Millais Close
Bedworth
Warwickshire
CV12 8TH
Independent examiner
Helen Furlong FCCA
McLintocks INW) Limited
46 Hamilton Square
Biikenhea
Wirral
Merseyside
CH415AR

HUNTINGTON'S DISEASE YOUTH ORGANISATION LTD
CONTENTS
Page
Trustees, rtsport
Independent examiner's report
Statement of finanual aCtI￿tieS
Balaneè sheet
Notes lo the financial statements
6-10

HUNTINGTON'S DISEASE YOUTH ORGANISATION LTD
TRUSTEES, REPORT (INCLUDING DIRECTORS. REPORT)
FOR THE YEAR ENDED 31 DECEMBER 2021
The trustees present Iheir annual report and financial slalements for the year ended 31 December 2021.
The financial slalemen15 have been prepared in accordancè with thè accounting policiès set out in note 1 to the
financial statements and comply with the ch8rty's Memorandum and Articles of Assoei81ion, the Companies Act
2006 and "Accounting and RepDrting by Charities.. Slalemenl of Recommended Practice applicable lo charities
preparing their accounts in accordance with the Financial Reporting Standard applicable in the UK and Republic of
Ireland IFRS 1021" leffeclivo 1 January 2019).
Objectives and actlvitles
The rharily's objects are lo relieve the need of young people impacted by Huntington's Disease in partioularfy. but
not exclusively. by thè provision of information and support.
The tru5tee5 have paid due ￿gard to guidance issued by the Charity Cornmission in deciding what activities the
charity should undertake.
Achievements and performance
During the year to 31 Dècembèr 2021 thè org8nis8tion laun¢h&d the new redesigned w&bsilé and èntèrèd into thè
following Educational programmès..
JOIN-HD The juvellile-Qnset Inillative for Huntington's disease
A Global Registry to connect the
commuTrity of those affected by JOHD. increasing the understanding of the disease & encouraging future
research
Youth Mèntorship Program. Thi5 program provides a young person Imentee} wth one lo one time with
another person Imenlorl who will Teceive training & ongoing support
Inlemalional Arnba5sador5- Young people who bring real-lif8 experiences to better advocate for the entire
ommunity.
Research Wideo Series ~ In partnership wilh HD Buzz. we develop frequent videos to showcase the lalesl
news in HD research.
Breaking Down Barriers Series- We tacklè th8 stigmas surrounding HD.
Flnancial reylew
In the year to 31 De￿mber 2021 the charity had incoming ￿59[1ree$ of £104,12012020 £202,043) and expenditure
of £85,46612D20 £205,855) giving a surplus of £18,654. A¢¢umulaled unr&slri¢ted fr8e rèsarvès at 31 Decembèr
2021 amountèd lo £42.683.
11 is the policy of the charity that unreslriGted funds which have not been designated for a specific use should be
maintained at a level equivalent to be￿een thr9è 2nd six month's expènditure. The trustees consider that reserves
al this level will ensure that. in the ev¢nl of a Significant drop in funding. they will be able lo continue the cha￿ly'S
cuirenl activities while consideration is given to way5 in which additional funds may be raised. This level of reserves
has been maintained throughout the year.
Structure. governance and management
The charity IS 8 company limited by guarantèe and is governed by the Memorandum and Articles of Assoclalion.

HUNTINGTON'S DISEASE YOUTH ORGANISATION LTD
TRUSTEES, REPORT {INCLUDING DIRECTORS. REPORT) (CONTINUED)
FOR THE YEAR ENDED 31 DECEMBER 2021
The trustees, who are also the directors for the purpose of company law, and who served durÈng the year and up to
the date of signalurÈ of the financial stalernents were..
C Brailhwaite
LBrynne
H Ging
B L Hennig-Treslm8n
Dr H E Hubberstey
C Martin
U McNamara
E Miller
R Schaffralh
D Spencer
A Vveiser
None of Ehe Iruslees has any benefiaal interest in the company. All of the trustees a￿ member5 of the company and
guaianleg to contribute £10 in the event of a winding up.
The trustegs, Teport was approved by the Board ol Trustees.
Dr H E Hubbèrst8y
Trustee
07/10/22
Date..

HUNTINGTON'S DISEASE YOUTH ORGANISATION LTD
INDEPENDENT EXAMINER'S REPORT
TO THE TRUSTEES OF HUNTINGTON'S DISEASE YOUTH ORGANISATION LTD
I rèport to the Iruslees on my examination ol the financial statements of Hunlinglon's Disease Youth OTganisation
Ltd Ithe charity) for the year ended 31 December 2021.
Rèsponsibi15tses and basis of report
As the Iruslees of the charity land also its directors for tha purposes ol company lawl you are responsible for th&
preparation of the financial statemènts in accordancè with IhÈ requiremènts of thè Companiès Act 2006 (the 2006
Acti.
Having satisfied mysew that thè finandal statèmènts of thè eharity 3r& not ￿qLl￿rÉd fo bè audltèd undèr Part 16 of
the 2006 Ad and aTe eligible for independent exarninalion, I report in respect of rny examinatlDn of the charity's
financial slalemerits carried OLrt under sedion 145 of the Charities Act 2011 (the 2011 Act). In carrying out my
tsxamination I have followed all the applicable Dire¢tions givon by the Charfty Commission under seclion 145IS}Ib)
of the 2011 Act.
Indèpèndènt Èxamine￿$ statement
I have compl¢led my examination. I confirm that no matters have corne lo my attention in connection with the
examination giving me Gause lo believe that in any material respect..
accounting records werè not kèpt in rÈsped of IhÈ ch3rily a5 required by section 386 of the 2006 Att,. or
the financial slatements do not accord with those rewrds- DI
the finan￿31 slalemenls do not cornply with the accounting requirements ol section 398 of the 2006 Act other
than any fequiremenl that the accounts give a true and fair view which is not a matter considered as part of an
indèpèndent examination.. or
the finan¢ial 51alotn8n15 have not been prepared in accordance with the rnelhods and principles of the
Statement of Re¢omtnended Practice for accounting and Teporting by charities applicable lo charities
preparing their aettounls in accordance with the Financial Reporting Standard applicable in the UK and
RÈpublie ol Ireland IFRS 102).
I have no concerns and have come across no other Matt￿ in eonnÈth"Dn with Ihè examination to which attention
should be drawn in this report in ordor lo enable a proper understsnding of the Inancial slalements lo be reached.
Helèn Furlong FCCA
McLintocks INWI Limsted
46 Hamilton Square
Birkenhead
Wirral
Merseyside
CH415AR
Dated: ..l.l...lQ....U..

HUNTINGTON'S DISEASE YOUTH ORGANISATION LTD
STATEMENT OF FINANCIAL ACTIVITIES
INCLUDING INCOME AND EXPENDITURE ACCOUNT
FOR THE YEAR ENDED 31 DECEMBER 2021
Unr&$trict¢d Unrestrlcted
funds
funds
2021
2020
Notès
Income from:
Donations and legacies
Charitable aclivil*s
Other trading activities
13,458
90,606
56
7,448
188,457
6,138
Totsl income
1 D4,120
202,043
Ex
èndlturè on:
Charikble activilies
85,466
205,855
Net In¢omellexp¢nditurel for the yearl
Net movement in funds
18,654
13,8121
Fund balances at l January 2021
24,029
27,841
Fund balances at 31 December 2021
42.683
24,029
The 51alement of financial activities includes all gains and losses recognised in the year.
All income and expenditure dEtiv¢ f¥om conlirhuing activities.
The statement tsf financial activities also complies with the requirements for an income and expendiluie account
nder the Cornpanies Act 2006.

HUNTINGTON'S DISEASE YOUTH ORGANISATION LTD
BALANCE SHEET
AS AT31 DECEMBER 2021
2021
2020
Notes
Current a¥sets
Cash at bank and in hand
43,883
25,229
Creditors: amounts falling duè within
one year
10
11,2001
17,2001
Nèt current assets
42,683
24,029
Income funds
Unrestricted funds
42,683
24,029
42,683
24,029
The company 15 enlilled lo the exemplion Irom the audil r¢qulrsmenl ￿ntaIned in section 477 of the Companies Act
2006, for the year ended 31 December 2021.
The directors acknowledga their rèsponsibilitiès for complyirig with the requirèmènts of the Companiès Aot 2006
wilh respect to accounting records and thè preparation of financial st#temÈnts.
The fflelnbers have not iequired the company lo obtain an audit of its financial 51atemerbts forlhe year in question in
accDrdance with section 476.
These financAal statements have been prepared in accordance w¥th the provisions applicable to companies subject
to thé small companies regimè.
07/10122
The financial statèmènts WÈ19 approved by the Trustees on .........................
Dr H E Hubbersley
Trustee
Company re9istration number 07821651

HUNTINGTON'S DISEASE YOUTH ORGANISATION LTD
NOTES TO THE FINANCIAL STATEMENTS
FOR THE YEAR ENDED 31 DECEMBER 2021
Aceounting policiès
Charity infomiatlon
Huntington's Diseaso Youth Or9anisalion Ltd is a private company limited by guarantee inCOTpof8led in
England and Wales. The registered oTrffice is 28 Millai5 Close, Bedworth. Watwicktshi￿. CV12 8TH.
1.1 Ac¢ountlng convention
The financial stslemenfis h8ve been prepared in a¢cordance with the charivs Igoveming docurnenfl, the
Companies A¢1 2006, FRS 102 The Financial Reporting Standard appli¢ablè in thé UK and Republic of
Ireland" fFRS 102,) and the Charitses SORP "Accounting and Reporting by Charities: Ststement of
R8commanded Practicè 3pplicabl& lo ehariliès prèparing thèir accounts in accordan￿ with the Financial
Réporting Standard 8pplicable in the UK and Republic of Ireland IFRS 1021" 18ffective 1 January 20191. The
d)arity is a Public Benefit Entity as defined by FRS IQ2.
The charity has tak&n advantage of the prc*visions in Ihfj SORP for charities not to prepare a Slalemenl of
Cash Fltsws.
The financial slalemenls are prepared in sterling, which is the functional currèncy tsf thè charity. Monetary
amounts in these financial statements are rounded to the nearest £.
The financial statements have bèen preparèd under the historical cost convention. The principal acoounling
policies adopted are s&t out below.
1.2 Going ¢on¢grn
At the tima of approving thè financial statèmènts. the trustees hav& a reasonable expectation that the charsty
has adoquale resourc¢s to continue in oporatioTrnal existence for th¢ foireseeable future. Thus the truslees
onlinue lo adopt the going conoem basis of aGwunling in preparing the financial statements.
1.3 Charitablp funds
Unrestricted funds a￿ available for use at the discretion of the trustees in furtherance of their Gha¥ilable
objèotives.
Rèstricted funds are subject to spècific conditions by donors as to how they may be used. The purposes and
uses of the restrfcted funds are sel out In the notes lo the financSal slalemenls.
1.4 Incomè
IncornE is reGogni5ed when the chatity is legally enliued lo it after any perfomance conditions have been mel,
the arnoun15 can be measured reliably, and it is probable that income will be re¢eived.
Cash donations are recognised on receipt. Other donations are recognised once the charity has beon riDlified
of the donation, unless performance ￿nditionS requirè deferral of the amount. Income tax recoverable in
relation to donations received undeT GiftAid or deeds of covenant is recognised al th¢ time of the donation.
Legacies are recognised on receipt or otherwise if the charity has been notified of an impending dislribulion,
the amount is knDwn, and recèipt is èXP8Cted. If thè amount is not known, the legacy is Irealed as a
conlingenl 8ssel.

HUNTINGTON'S DISEASE YOUTH ORGANISATION LTD
NOTES TO THE FINANCIAL STATEMENTS (CONTINUED)
FOR THE YEAR ENDED 31 DECEMBER 2021
Accounting policies
(Continuedl
1.5 Expènditurè
Expenditure is recognisèd once there is a legal or constructive obligation to Iransfer economic benefit to a
third party. il is probable that a transfer of economic benèffts will bè rèquired in sètlèment, and thé amount of
the obltgalion can be measured reliabty.
Expenditure 15 classified by aclivily. The costs of each activity are made up of the total of direct costs and
shared costs, induding support costs involved in undèrtaking èach activity. Direct costs xttribulable to a single
activtty are allocated diieBtly lo that activity. ShaTed cos15 which contribute lo more than one activity and
support ¢osts which are not attributable lo a single activity are apporboned be￿een those activities on a basts
consi$lenl with the use of resources. Central staff oosts are allocated on the basis r)f lime spent, and
depreciation charges are allocated on the portion ol the asset's use.
1.6 Cash and cash equivalents
Cash and cash equivalents include cash in hand, dèposits held at call with banks. other short-t8rm liquid
investments With original maturities of three months or less. and bank ovèrdrafts. Bank ovèrdrafts are shown
within borrowings in current liabilities.
Basie financlalassets
Basic financial assets. which include debtors and cash and bank balancès, are initiAlly mèasured al
transaction price including transaction ¢o&ls and are subsequently carfied al amortised cost using the effeBlive
interest method unless the arrangèment ¢onstitule8 a financing Iran5aclion, where the transaction is
measured al the presgnt value of the ILrture receipts dI￿ounted at a market rale of interest. Firiancial assets
classified as receivable within onè year are nat amortised.
Basic fJnanciTal liabfflitie¥
Basic financial liabilities, including erediiors and b8nk loans are in(ti8lly recognised at Iiansaolion price unless
the arrangement constitutes a financing Ir8ns8¢1ion. where the debt in51rumenl 15 measured al the Pfesenl
value of the future payments discounted at a maiket rate of interest. Financial liabilities classified a5 payable
within one year are Dol artiortised.
Dèbt instrurnen15 are subsequenlly carried at amorbsed cost, using the effodive intere51 rat¢ method.
Trade Gredilors are obligations to pay for goods or seTrqces that have been acquired in the ordinary course of
operations from supplièrs. Amounts payablè #re classrfied a5 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
trans8Ction ptice and subsequently measured at amortised cost using thè eflaotive interèst mèthDd.
Derecognffllion of financial liabilities
Financial li3bilitleS are dere¢ognised when the charty's contradual obligations expire or are discharged or
cancelled.
1.7 Employee bènefits
The cost of any unused holiday entillemenl is recognised in the period in which the 6mployee's services are
received.
Temiination benefits are recognised immediately as an expense when the charity is denonslrabty comrnitted
to terminate the employmènt of an employee or lo provide termination benefits.
1.8 Retlrement beneflts
Payments to defined conlribuknon reliTemenl benefit schemes are charged as an expense as they fall due.

HUNTINGTON'S DISEASE YOUTH ORGANISATION LTD
NOTES TO THE FINANCIAL STATEMENTS (CONTINUED)
FOR THE YEAR ENDED 31 DECEMBER 2021
Critical accounting èstimatès and judgèmènts
In the application of the charity's accounting policies, the Iruslees are required lo make judgements, estimates
and assumptions about thè e8rrying amount of assets and liabilities that are not readily app8rènt from other
sources. The eslim81es and associated a55umplions are based on historical experience and other lactors that
are considered to be relevant. Actual results may differ from Ih8sÉ estimates.
The estimates and underlying assumptions are reviewed on an ongoing basis. Revisions tts a¢eounling
estimates are recognised in the period in which the estimate is revised wher@ th@ revision affects only that
period, or in the period of the ￿vIsion and fuluie periods where Ihe revision affects both current and fulu
periods.
Donatlons and lega¢les
Unrestricted Unrestricted
fund5
funds
2021
2020
Donations and 9ifts
13,458
7,448
Charitablè activiti•s
2021
2020
Grants received
90,606
188,457
Other trading activitie5
Unrestricted Unre$tricled
funds
funds
2021
2020
Events
6,138

HUNTINGTON'S DISEASE YOUTH ORGANISATION LTD
NOTES TO THE FINANCIAL STATEMENTS ICONTINUEDI
FOR THE YEAR ENDED 31 DECEMBER 2021
Charitable activities
2021
2020
Mentorship projeot costs
Research video costs
3.122
4,*3
8.085
Share of support costs Isee note 71
Sharè of governan￿ costs (see note 71
76.181
1.200
204.655
1.200
85,466
205,855
Support costs
Support Governance
costs
osts
2021 Support costs Govemance
osls
2020
staff costs
Confer¢nGe costs
Website costs
IT ccY615
Travel 8nd 8C¢Dmodalion
Printing, postage and
stationèry
Advertising
Professional feès
Administration expenses
Bank charges
47,785
10,966
10,139
1,967
531
47,785
10,966
10,139
1,967
531
87,860
67,912
21,086
2,311
2.298
87,860
67,912
21,086
2,311
2,298
1,673
673
1,￿0
884
103
1,673
673
1,460
1,069
82
19,197
2,825
1,069
82
19,197
2,825
75
103
Independent examination
fee5
1,200
1.200
1,200
1.200
76,181
1.200
77.381
204,655
1.200
205,855
Analysèd between
Charitable activities
76,181
1,2CKI
77,381
204,655
1,200
205,855
Trustees
Ntsne of the tmste¢s lor any persons connècted with them) received any remuneration or benefits from the
charity during the year.

HUNTINGTON'S DISEASE YOUTH ORGANISATION LTD
NOTES TO THE FINANCIAL STATEMENTS {CONTINUED>
FOR THE YEAR ENDED 31 DECEMBER 2021
Employees
The average monthly number of employees during the year was..
2021
Number
2020
Number
Employment Costs
2021
2020
Wages and salaries
Other pension cosls
47,223
562
77.171
10,689
47,785
e7.860
ThèrÉ ware no employees whose annual remuneration was more than £60,000.
10 Creditors.. amounts falllng duè within on• year
2021
2020
Acertjals and defetred income
1,200
1,200
11
Relatgd party transactions
There were no disclosable related party Iran5action5 during the year12020- none).
10