BEING HELD AT TOYNBEE HALL, LONDON E1 – SHARING OUR FINDINGS AND PROGRESS
10.15 Coffee available and networking
11.00 Opening remarks – Rosanna Preston, Trustee, The VTCT Foundation
11.05 Plugging a hole and building the dam – Increasing fundraising capability in a visible difference charity
This will be an overview of our successful #SaveCLAPA appeal and the 1st 6 months of a one year project ‘Investing in CLAPA’s fundraising capabilities’ funded by the VTCT Foundation.
This presentation will cover a declining income trend prompting the need for review and change within the charity. It will also cover the immediate need for action through the delivery of an emergency appeal and how that had led to the development, approval and implementation of a new Income Generation Strategy aimed at increasing revenue and diversifying income to reduce in-year risk. It will also discuss embedding ‘a new culture of fundraising’ into a visible difference charity and discuss early outcomes of the project and our future aspirations as a result of this investment.
Mikaela Conlin-Hulme, Head of Income CLAPA
11.30 Translating Visible Difference Research into Practice
This will be an overview of Year 1 of a 4 year programme of research funded by the VTCT
Foundation, and a Partnership PhD funded by the VTCT Foundation and UWE, Bristol
This presentation will include two streams of work being carried out by a team at the Centre for Appearance Research:
- Social Media and Visible Differences
- Supportive Interventions for people impacted by visible differences (including thePartnership PhD, on online support for people affected by burn injuries).
It will give an update on a range of studies currently in progress, and present findings from a survey of the support needs and preferences of adults and young people (as reported by parents) with visible differences.Professor Di Harcourt, Co-Director, The Centre for Appearance Research
12.10 VTCT Foundation Career Development Programme – Awards from 2022
3D Bioprinting Cartilage for Facial Reconstruction
Tissue engineering with 3D printing (‘bioprinting’) has the potential to create precise, three-dimensional cartilage structures using biologically-compatible materials as ink carriers loaded with patient’s own cells. The Reconstructive Surgery and Regenerative Medicine Research Centre (ReconRegen) is developing a novel, natural, Nanocellulose-based bio-ink for this purpose, with extensive characterisation demonstrating excellent chondrogenic, rheological (printing) and mechanical properties. Biocompatibility is a critical bridge between bench and bedside. In collaboration with the In Vitro Toxicological Group at Swansea University, an advanced 3D in vitro model is being developed for biocompatibility testing of this novel biomaterial for facial cartilage tissue engineering.
Research Fellow: Cynthia Decourcey – Action Medical Research/Swansea University
Unravelling the causes of craniosynostosis: the role of BCL11B
Craniosynostosis is a type of malformation in which the bones of the skull become fused too early. It is the most common malformation of the skull and second most common craniofacial malformation after cleft lip and/or palate. The Oxford Clinical Genetics Group has been investigating the genetic causes of craniosynostosis for almost 30 years, driven by a desire to provide better information for the families and understand how this condition arises. The talk will focus on the role of the gene BCL11B in craniosynostosis, including a description of 3 new European patients with this condition.
DPhil: Heather Vedovato dos Santos, MRC Weatherall Institute of Molecular Medicine, University of Oxford
12.50 Adults with Craniosynostosis: Creating Online Resources to reduce Distress (ACCORD)
The word ‘accord’ means ‘to give someone power and recognition’, particularly if they have not had their voice heard before.
While children with craniosynostosis and their parents have been fairly extensively studied over recent years, adults with these conditions have not received the same level of attention.
In a small-scale study funded by VTCTF in 2018, adults living with craniosynostosis were found to experience significantly poorer mental health outcomes than their peers without the condition. The research also highlighted the absence of dedicated treatment and support for this group.
The ACCORD project sought to address these gaps by working with adults with craniosynostosis to co-produce and evaluate new online resources, and to give voice to this previously largely invisible community.
In this presentation, Karen Wilkinson-Bell from Headlines and Dr Bruna Costa from CAR will showcase the project and its outcomes.
Karen Wilkinson-Bell, Director, Headlines, Dr Bruna Costa, Research Fellow, CAR
13.15 Lunch and networking
14:15 – 14:30 Launch of EDI funding stream
This introductory talk will explain the EDI funding stream which the VTCT have launched. It will explain the process of applying for a grant relating to EDI and will discuss some examples of the kinds of projects which might be submitted to the VTCTF for consideration.
Tony Lau Walker (VTCT Trustee) and Dr Hannah Saunders (QMUL)
14:30 – 14:50: EDI for charities
Mandeep Rupra will discuss her experiences formulating and monitoring the Citizens Advice EDI initiatives, and will share her learnings and some practical tips on steps which charities can take to become more inclusive.
Mandeep Rupra, Director of Equity and Culture at Citizens Advice 14:50 – 15:00: EDI at CAR – Dr Nicola Stock (recorded)
Dr Nicola Stock is an Associate Professor at the Centre for Appearance Research (CAR), at the University of the West of England in Bristol. Dr Stock will emphasise why EDI is a priority for the Appearance Collective charities, outline what EDI experience CAR can offer, and highlight suggestions for a programme of work in this area.
15:00 – 15:10: Visible difference among young Somali adults
Dr Bruna Costa is a Research Fellow at the Centre for Appearance Research (CAR), at the University of the West of England in Bristol. Dr Costa will share her experiences of recruiting and interviewing young Somali adults with a visible difference as part of her VTCTF-funded Doctoral thesis.
Dr Bruna Costa (CAR)
15:10 – 15:30 Q&A to panel (Mandeep, Bruna and Di Harcourt) 15:30 – 15:50 Tea break
15:50 – 16:10 Improving access to rights under equality law for people with a visible difference at work
Hannah’s two year project at Queen Mary in London, funded by the VTCTF, will draw to a close in August this year. She will discuss some of her project highlights working alongside several of the Appearance Collective charities. This includes taking the case for visible difference equality to the United Nations alongside Face Equality International. She will also share and explain one of her project outputs – her newly-creating guidance for employers about appearance-inclusive workplaces.
Dr Hannah Saunders, QMUL
16:10 – 16:15 Questions to Hannah
16.15 Final Questions
16.30 Close – Rosanna Preston, Trustee, The VTCT Foundation