Goals and Achievements

We would like to thank the microtia community and their friends and family for their continued support, generosity and helping us to accomplish so much. We have documented some of our main achievements below, along with our future goals. If you would like to help the charity further with our aspirations, please contact us via email info@microtiauk.org.

 

Achievements

2010

Microtia Mingle Support Group created as a Facebook support group (now Microtia Mingle UK – Microtia UK Support Group).

2012

Children’s book ‘Issac and Lilah (A story about similarities and differences)‘ written and printed to promote positive image.

2013

Microtia UK charity evolved from the Microtia Mingle Facebook group.

Coram Fields picnic organised. The first time in the UK that medical professionals and those involved in scientific research were invited to present on key topics to those affected by microtia and their families.

Workshop for adults with microtia to talk about their life experiences and to learn from them.

Charity website launched.

2014 

Charity bracelets designed and produced to raise awareness of the condition within the community and to raise funds for Microtia UK.

Microtia UK awarded charity status.

First fundraising event – charity launch party.

New Parents Guide published and distribution started.

Presented in BAPRAS conference and contributed towards the New Care Standards for patients with microtia/atresia. To view, click here

Children’s book ‘Isaac Gets His BAHAs Fitted!’ about Bone Anchored Hearing Aid surgery written and published. Printing funded by Cochlear & Oticon.

2015

Cuddly toy/mascot designed to raise funds, awareness and promote positive self image.

Paradise Park Microtia UK Family Fun and Information Day sponsored by Cochlear.

Cochlear & Oticon agree to sponsor our New Parents Guide to help with the printing costs.

2016

London Microtia UK Family Fun and Information Day sponsored by Cochlear & Oticon.

Edinburgh Microtia UK Family Fun and Information Day sponsored by Cochlear & Oticon.

2017

Life size elephant mascot created to raise awareness at events.

London Microtia UK Family Fun and Information Day sponsored by Cochlear and Oticon.

Edinburgh Microtia UK Family Fun and Information Day sponsored by Cochlear and Oticon.

2018

The launch of a new charity website.

Securing sponsorship for our charity fundraising vests which also brought the launch of new children’s fundraising t-shirts so they can join in with raising awareness – Thank you AGILIS Mobile

London Microtia UK Family Fun and Information Day sponsored by BHM-Tech, Cochlear, MED-EL and Oticon.

The following research grants were issued:

1) Aston University, Dr Amanda Hall for further research into Single Sided Deafness.

2) Centre for Appearance Research, University of England, Bristol for further research of psychological impact if Microtia.

3) Great Ormond Street Hospital for cell Incubator to try to improve ear and facial reconstruction method for the future.

4) Scottish National Ear Reconstruction Services & the University of Edinburgh for Scaffold identification for ear reconstruction.  All results be shared with the Microtia community and medical professionals linked to Microtia.

2019

Thanks to AGILIS Mobile for their continued sponsorship of our fundraising vests and t-shirts.

London Microtia UK Family Fun and Information Day sponsored by BHM-Tech, Cochlear, MED-EL and Oticon.

We held a mingle in West Midlands Safari Park.

Reviewed and amended the New Parents Guide.

We have secured a grant thanks to The National Lottery Fund to help us to create a new children’s book.

The following research grants were issued:

1) Many thanks to the VTCT Foundation who awarded funding for research in conjunction with the Centre of Appearance Research. This research will look at exploring parents’ experiences of having a child with microtia, including the support needs of both parents and young people, the availability and experiences of support, and decision making about surgery. The research results will be made available and shared on our website and with medical professionals.

2) University College London, Patrizia Ferretti and Neil Bulstrode for research into ear reconstruction using cartilage bioengineered from autologous cells.

3) Swansea University, Thomas Jovic to support ongoing research efforts in cartilage tissue engineering for ear reconstruction.

4) Aston University, Saira Hussain and GOSH, Robert Nash, Neil Bulstrode and Lindsey Edwards are aiming to understand the patient experiences of those with microtia and improving their clinical decision-making processes. The two institutions will be working in parallel to help enhance the knowledge currently available on this population to help improve outcomes for those with microtia.

5) GOSH, Robert Nash, Neil Bulstrode and Lindsey Edwards for a study to compare academic attainments in literacy and numeracy with those predicted on the basis of intellectual ability, in children with unilateral microtia.

6) Colin Link for Stage 1 – supporting the creation of initial samples of silicone implants and travel.

7) Evelina London, Dr Orla Fehily and Melinda Edwards are creating an audio-visual resource for young people who have microtia and atresia. Lead by the ‘experts by experience’, the film will provide an invaluable resource for young people, their friends and family, and professionals involved in their welfare, from health-care to education.

8) We have been funded by the National Lottery Fund for the charity to write, design and print a new specialist book to support those born with microtia. The book will be aimed at Primary School aged children and it will give the children something positive to share and talk about. We are hoping the book will be complete in May 2020.

Goals

Produce more information leaflets (aimed specifically at schools).

Help campaign for mandatory provision by NHS of BAHA soft bands for children with microtia.

Continue to organise annual events for experts to present on chosen topics to the microtia community and continue to arrange microtia community mingles.

Improve psychological support.

Work with medical professionals to create microtia centres of excellence in the UK.

Produce short film on microtia promoting awareness.

Organise first Family Fun and Information day in Midlands and Ireland.

Continue to raise awareness through popular sporting fundraising events.

Continue to support research in to the advancement and improvement of care or life of those with microtia in the following areas; reconstructive surgery, psychological impact on looking different, impact of single sided deafness and lastly the improvement of hearing technology.

To organise an event specifically for adults and teenagers.