2023-06-30-accounts

This text was generated using OCR and may contain errors. Check the original PDF to see the document submitted to the regulator.

Trustees Report for Financial year Ending June 2023

Registered Charity Number: 1184321

Address: 1354 Peartree Cir OAKVILLE, ONTARIO L6M 2J2 CANADA

Contact Details: Cristian Baigorria

Prepared Aug 20, 2023 Approved by Trustees: Sep 19, 2024

STRUCTURE, GOVERNANCE AND MANAGEMENT .......................................................................... 3

CHARITY TRUSTEES: .......................................................................................................................... 2 MANAGEMENT:............................................................................................................................... 2 ABOUT THE GLOBAL ALLIANCE FOR PKU (GAP) ...................................................................................... 2 GAP STRATEGY STATEMENT ............................................................................................................... 3 GAP ACTIVITIES FOR 2019/2020 YEAR ........................................................................................... 3 ACHIEVEMENTS ........................................................................................................................... 4 FINANCIAL REVIEW ...................................................................................................................... 4 DECLARATIONS ............................................................................................................................ 5

Structure, Governance and Management

The Global Association for PKU is a registered charity with Charity Commission of England and Wales, it is a Charitable Incorporated Organisation (CIO) governed by charitable objects.

Charity trustees:

Name

Date appointed

ALEJANDRO SPATARO LOUISE HEALY DENIZ ATAKAY TOBIAS HAGEDORN CRISTIAN BAIGORRIA RONALDO LOPES MONIQUE COOPER JOHN ADAMS JOSE DE JESUS MUNOZ NAVARRO LISA MILBERG RHONDA CONNOLLY BERNADETTE GILROY

08 July 2019 08 July 2019 (resigned 20 APR 2023) 08 July 2019 08 July 2019 08 July 2019 08 July 2019 08 July 2019 08 July 2019 08 July 2019 11 August 2022 11 August 2022 13 October 2022 (resigned 27 APR 2023)

Management:

The charity has an executive committee responsible for management of the organisation. The office bearers are voted on at each AGM. GAP has a detailed constitution that describes the governance and management of the organisation including the election of office bearers, member criteria, management and trustee terms and other key governance and management issues.

Chair : John Adams Vice-chair: Jose de Jesus Munoz Navarro Treasurer: Tobias Hagedorn Secretary: Cristian Baigorria Executive Committee members: Tobias Hagedorn and John Adams

Trustees generally meet every 2 months.

About the Global Alliance for PKU (GAP)

The charity was registered in 8 July 2019. The purpose of the GAP is to: 1) To promote and protect the physical and mental health of sufferers of phenylketonuria (PKU) through the provision of support, education and practical advice and in such other ways as the trustees consider appropriate; and (2) advance the education and understanding of the general public in all areas relating to PKU. The trustees developed a strategic statement to describe how the organisation will fulfil this intent.

GAP Strategy Statement

A regional and several country-based PKU patient organizations from around the world have collaborated to form the first Global Association for PKU – known as GAP. This global entity will serve as a supportive umbrella organization to regional and national patient organizations and groups in bridging the gap for PKU worldwide.

The Organization’s Vision is that all people living with PKU, despite their origin, will be able to reach their full potential.

Our mission is to advance PKU as a global health priority and strengthen PKU associations and groups throughout the world.

As people living with PKU, our priorities are:

➢ To create a global platform for PKU advocacy that includes ensuring universal access to newborn screening and diagnosis, treatments and comprehensive care;
➢ To mentor like-minded patient associations and groups and offer best practices and support that are sensitive to their experiences, culture, language(s) and laws;
➢ To increase collaboration among PKU researchers, scientists, clinicians and patient groups to move basic science and research forward to accelerate new knowledge, treatments, and a cure.

GAP Activities for 2022/2023Year

As a young organisation our main activities have been around establishment of appropriate governance and building the profile of the organisation in order to reach our intended targets and increase awareness of PKU worldwide.

Summary of activities:

Continue to develop appropriate fiscal and governance procedures to ensure compliance with charity registration requirements and to promote transparency and accountability to members and potential members, including conflict of interest policy, working with sponsors policy, financial management procedures and meeting procedures, member application procedures and fees.
Developed membership of the Global Association by accepting applications from the following like-minded PKU patient organisations :
(a) DIG PKU (German PKU Association)
(b) MDDA (Metabolic Dietary Disorders Association, from Australia)
(c) PKU Mexico (Mexican Association for PKU)
(d) CanPKU (Canadian PKU and Allied Disorders)
(e) National PKU Alliance (USA)
(f) PKUAI (PKU Association of Ireland)
Established subcommittees to function as working groups furthering the purpose and strategic intent of GAP. These include:
I. Finance and governance
II. Strategic projects: a) communications, b) audit of current status of Newborn Bloodspot Screening worldwide; and c) membership development.
Planned and conducted an international PKU patient meeting in late 2023 – from December 13 to December 19, 2023. This virtual meeting provided awareness, education and collaboration for current and emerging PKU patient groups around the world.

The trustees of GAP continue to work to ensure that our activities result in public benefit in particular improved health outcomes for people living with PKU.

Achievements

Establish communications and fundraising mechanisms
Strategy for awareness and fund-raising
Secured funding and progressed planning for the first ever global PKU patient education and awareness conference
Established collaborative partnership with member PKU patient organisations around the world.
Commenced strategy and tools for data collection on status of newborn screening.

Financial Review

As this is our third year of operation and due to the pandemic environment, the GAP have no reserve funds and have not spent any funds this year. The focus on the year has been establishing the appropriate legal structures, policies and procedures for the effective functioning of the charity into the future.

All trustees are volunteers with extensive experience in PKU patient organisations and have volunteered in excess of 150 hours in establishing this organisation and continue to volunteer in excess of 200 hours week in governing and managing this charity

The charity is not holding any funds on behalf of others.

Declarations

The trustees declare that they have approved the trustees’ report above.

Signed on behalf of the charity’s trustees

Signature(s) Full name(s) Cristian Baigorria Position (eg Secretary, Chair, etc)[Secretary ]

Date Sep 20, 2024

Charity Commission

Charity Commission Annual Return 2023

GLOBAL ASSOCIATION FOR PKU

Charity registration number: 1184321

Most of the information you give in this form will become publicly available on the Register of Charities. Any field that the Charity Commission will not display will be clearly marked. This document is a record of the information provided in the Annual Return 2023.

Financial period

Financial period start date

01/07/2022

Financial period end date

30/06/2023

Income and spending

Income £

£0

Spending £

£0

Number of contracts from government

How many contracts (other than grant agreements) did your charity receive from central government or a local authority during the financial period for this return?

Number of grants from government

How many grants did your charity receive from central government or a local authority during the financial period for this return?

Income breakdown

Donations and legacies (excluding Endowments Received)

£0

Charitable activities

£0

Other trading activities

£0

Investments

£0

Other

£0

Recipients of grants

Please round all figures to the nearest pound (do not enter decimal points or commas).Individuals

£0

Other charities

£0

Other organisations that are not charities

£0

Trustee payments

Excluding out of pocket expenses, for what were any of the trustees paid during the financial period for this return?

⊠ e. None of the trustees have been paid

Did any of the trustees resign and take up employment with your charity in the financial period of this return?

Income from outside the UK

Did your charity receive income from outside of the United Kingdom in the financial period of this return?

Delivering activities outside the United Kingdom

Did your charity deliver charitable activities outside of the United Kingdom in the financial period of this return?

Spending outside England & Wales

Did your charity spend funds outside of the United Kingdom in the financial period of this return?

Trading subsidiaries

Does the charity have any trading subsidiaries?

Charity contact details correct

Is the contact address displayed from the Register of Charities, correct?

Yes

Charity headquarters details correct

Is this the same address that you use as your charity's administrative headquarters?

Yes

Charity contact address

1354 PEARTREE CIR

OAKVILLE

ONTARIO

L6M 2J2

Canada

Charity Headquarters address

1354 PEARTREE CIR

OAKVILLE

ONTARIO

L6M 2J2

Canada

Membership type

Is the charity part of a wider group structure with a parent body and subsidiary bodies?

no, the charity is not part of a wider group structure

Employment contract types

People were permanently employed by your charity

People were on fixed-terms contracts with your charity

Self-employed people were working for your charity

Governance policies

Internal charity financial controls policy and procedures

Yes

Safeguarding policy and procedures

Financial reserves policy and procedures

Complaints policy and procedures

Serious incident reporting policy and procedures

Internal risk management policy and procedures

Trustee expenses policy and procedures

Yes

Trustee conflicts of interest policy and procedures

Yes

Investing charity funds policy and procedures

Campaigns and political activity policy and procedures

Bullying and harassment policy and procedures