The AADC Research Trust Volunteer Programme | 2022

The AADC Research Trust Volunteer Programme 2022

About Us The AADC Research Trust was established in 2006 as an international patient organisation for the ultra RARE disease Aromatic Amino Acid Decarboxylase deficiency; AADCd. The Trust was the vision of Lisa Flint, inspired by her son Jake, now aged 23 years, who suffers with AADCd.

That vision was to raise global awareness,

fund critical disease research and connect AADCd families from around the world.

Our Vision

By collaborating with the International medical and scientific disease experts, partnering with industry and uniting with the world’s patient population, we intend to eradicate the devastating, life-limiting, multi-disabling brain disease; Aromatic Amino Acid Decarboxylase deficiency (AADCd).

Our Mission

Today, everything is possible.

Our Values

Those who enrich, even one life, can provide immense value to an entire community. We are an insightful, supportive and determined group of individuals striving towards the same endpoint. Being patient centric is paramount to bringing about a cure. Our hope, our vision, our mission and our goal are unequivocally aligned. We endeavour to transform the lives of those unfortunate enough to be suffering at the hands of this devastating disease.

Join Our Team

Lisa Flint

Tony Flint

Professor Simon Heales

Founder & Managing Director

Founder & Director

Founder & Medical & Scientific Director

Brian Jeffries Founder & Director

Jacqui Jeffries

Julie Ramsay

Ross Moat

Founder & Director

Charity Manager

Pharma Consultant Advisor

Volunteering Volunteers are the unsung heroes of any

charitable organisation. Our volunteers have been at the core of our success so far. They are essential to our continued growth.

Volunteering is a unique role. It is hugely rewarding personally and professionally. People volunteer for many reasons, for example; they want to make a difference in the lives of others, they have been a

directly impacted by the charity's work, or because the chosen role offers a chance to learn new skills, knowledge and experience.

Whatever your reason for volunteering, The Trust looks forward to you joining the team!

Volunteer Roles Join us in 2022 and become part of a dynamic driving force in critical disease research, raising awareness and patient support!

We currently have several voluntary roles available.

Each one is critical to ensure that, as the International patient advocacy organisation for the global AADCd community, we continue to grow.

CHARITY PRESENCE

Social Media Guru Web Consultant Awareness Campaign Officer CHARITY FUNDING

Fundraising / Grant Writing Officer CHARITY RESEARCH

Holistic & Alternative Therapies Researcher GENE THERAPY

Gene Therapy Officer

CHARITY ADVISORS Pharmacy Advisor Nurse Advisor

AADCD COMMUNITY SUPPORT

Patient Engagement Officer CHARITY ADVOCACY

Advocacy Liaison Officer (UK & Europe) Advocacy Liaison Officer (USA) Advocacy Liaison Officer (China/East Asia) Advocacy Liaison Officer (Rest of Asia/Middle East) Advocacy Liaison Officer (Rest of the World)

Charity Presence Social Media Guru The Social Media Guru is responsible for our social media platforms including Twitter, Facebook and Instagram. You would actively engage with our supporters by posting topical and current news stories, introduce and welcome new families, monitor all other posts by Trust members, maintain membership requests, respond to comments as queries as appropriate and promote the charity to widen our reach.

Web Consultant

Awareness Campaign Officer

The Web Consultant is responsible for increasing our website's positions within Google and other search engines and maximising the use of tracking and cookies. You would monitor our website traffic and analyse the data to identify peaks and lows. You will ensure our website information is kept up to date and that we are utilising current trends to remain user friendly. You will ensure that we remain compliant with online governance by regularly reviewing our policies such as GDPR, Impartiality Statement, Privacy Policy, Terms & Conditions, etc

The Awareness Campaign Officer is responsible for the overall management of our annual 'Teddy Wears BLUE for AADCd Awareness Week' campaign. You will actively assist in the creation of new and exciting themes, ensuring it has maximum impact by collaborating with other team members to plan, manage and successfully promote the campaign so that we increase our reach year on year.

Charity Funding Fundraising/Grant Writing Officer The Fundraising/Grant Writing Officer is responsible for the creation of online and localised fundraising campaigns throughout the year. This would include content, design, promotion and management.

You will actively engage with and inspire individuals and organisations to donate to our cause., while maintaining and developing relationships with our current supporters.

You will research potential sponsors, creating compelling applications for charitable grants/awards to submit to suitable philanthropic organisations, individuals, etc that you have sourced.

This role is incredibly valuable to the charity. It is essential that we are able to create new fundraising opportunities, allowing us both to continue in our current position as the foremost patient advocacy organisation for AADCd and to keep growing, so we can push forward with our mission to find a cure!

Charity Research

Gene Therapy

Holistic & Alternative Therapies Researcher

Gene Therapy Officer

The Holistic & Alternative Therapies Researcher role requires a deep understanding of the mechanism of AADCd. You will source and research credible, new and emerging therapies, that show potential benefits for AADCd children and young adults. Once identified you will present your findings in order to investigate further, make our Professional AADCd experts aware and transfer this into substantiated information for families.

The Gene Therapy Officer will keep abreast of all updates on Gene Therapy for AADCd. You will collate and disseminate any information that would be beneficial to our community, such as general guidance, availability, latest developments, etc. You will follow the personal journeys of our AADCd children pre, during and post treatment, as part of a project to document their progress in preparation to share their stories and highlight any areas of concern.

Charity Advocacy Patient Engagement Officer

Advocacy Liaison Officer

The Patient Engagement Officer is responsible for enrolling new or existing families to the Trust, guiding them through various memberships, support and information that we provide. You will actively engage with them, encouraging them to participate within our community ensuring our patient population has a voice. You will assist in the creation of a page on our website dedicated to this providing essential information and useful resources for affected families.These may also be shared via our social media platforms.

The Advocacy Liaison Officer will actively engage with affected families in allocated regions, providing a critical connection between those families and The Trust. You will offer translation services and support when required. Additionally you will monitor AADCd research activities being carried out in the allocated regions and encourage collaboration.

Charity Advisors Pharmacy Advisor

Nurse Advisor

Bereavement Officer

The Pharmacy Advisor is responsible primarily for answering any drug related queries from AADCd families.

You may be asked to contact pharmaceutical companies on our behalf for further information on AADCd related matters.. As we move forward with Gene Therapy we may require you to investigate additional ‘new’ and ‘existing’ medications that could be required as an adjunct to this and any other future emerging therapeutic intervention.

The Nurse Advisor is responsible for advising affected families on nursing related issues and helping them through hospital procedures which require guidance and training on returning home. You will provide useful instruction on certain ‘skilled’ aspects of AADCd family life. This could be created in various media formats which could be displayed on our website and other social media platforms.

The Bereavement Officer is an incredibly important role. You will be available to provide support to any bereaved family, offering guidance through the most difficult of times. Through supporting families we endeavour to learn from these devastating experiences and through difficult discussion ascertain how we may avoid, where possible, repeated incidences happening to other AADCd children. You will be key in these discussions providing critical insight.

Charity Legal Governance & Safeguarding Officer The Governance & Safeguarding Officer is responsible for ensuring that the charity complies with current legislation and keeps abreast of all new and emerging governance guidelines, including Safeguarding policies and procedures. This role would include updating and/or creating Charity policies to ensure that we are compliant with all regulatory bodies.

HR Officer The HR Officer will maintain all Human Resources documentation requirements, policies and procedures.

In particular, we are keen to maintain and promote an inclusive and diverse work ethic and to follow good mental well being strategies amongst our staff and volunteers.

Commitments Volunteers are asked to share as little or as much as time as possible. This could mean a few hours a week or a few hours a month. We know that it can be extremely difficult to commit your time when you may have other obligations, such as other employment, caring for a child, etc so we are entirely flexible.

Specific tasks may require more of a commitment. If at any point you are struggling to meet a deadline we are here to help! The team is always at hand to assist and share the load.

You will be responsible to the Charity Manager and as such periodic meetings will be held with at least one Trustee member present, where we can all discuss ideas, strategies and concerns. These meetings will be via Zoom and organised at times suitable to all attendees, as we are a global community!

As a volunteer you will be a representative of The Trust. In this capacity we would expect you to advocate for the charity in a positive and responsible manner at all times.

The Trust is committed to the welfare of the children and families that we represent. We would expect you to respect their privacy and adhere to all confidentiality policies as you may be privy to personal information at times. To that effect you must be willing to sign a confidentiality agreement that protects our community, yourselves and The Trust.

Join us as we enter 2022 & help us to help them!

The AADC Research Trust Contact Us 202 Soper Hall, Harefield Avenue, Caterham CR3 6HY enquiries@aadcresearch.org www.aadcresearch.org