<p>A brief thank you film to people involved in the project</p>

A brief thank you film to people involved in the project

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Acknowledgements

This website would not have been possible without a vast number of contributions from a wide range of individuals.

 

Special Thanks to


All the families and individuals with rare genetic syndromes who took part

Effie Pearson for web content development & Steve Crawford for video development and production.

The syndrome support groups who supported this project:  Kleefstra syndrome support groupCri du Chat syndrome support group, ASSERT, Fragile X Society, Prader-Willi Association, Cornelia de Lange Association UK & Ireland, Smith-Magenis Foundation; UNIQUE

 

Funding


Economic and Social Research Council (ESRC)

Cerebra

Birmingham Community Healthcare NHS Trust

 

Website Concept


Jo Moss

Chris Oliver

 

Webdesigners

Ultimate

 

Content Development Team


Lead: Jane Waite

Effie Pearson

Georgie Agar

Laura Groves

Manjeet Susch

Iman Hassan

Hannah Ramshaw

Miriam Chaudhry

Amna Karim

Edward Ingram

Julie Shackleton

 

Website Administrators


Efiie Pearson, Adele Gnandte, Georgie Agar, Rachel Royston, Tracey Grandfield, Hannah Ramshaw, Miriam Chaudhry, Amna Karim, Edward Ingram, Julie Shackleton

 

Writers


Chris Oliver, Jane Waite, Effie Pearson, Jo Moss, Lucy Wilde, Leah Bull, Mary Heald, Hayley Crawford, Victoria Johnson, Lisa Nelson, Gemma Griffith, Jane Petty, Penny Tunnicliffe, Richard Hastings, Pat Howlin, Leah Bull, Darrelle Villa, Michael Yip, Amna Karim, Edward Ingram and Julie Shackleton

 

Media Production


Steve Crawford (CreativoCrawford), Storyworks, Jane Waite, Mark Ray & Steve Broster (Creative Media – University of Birmingham)

 

Media Contributions


Caroline Richards, Sissy Stefanidou, Deborah Allen, Daisy Twigger, Katherine Ellis, Jessica Penhallow, Lisa Cochran, Jayne Trickett, Alice Welham, Efthalia Karakatsani, Dawn Adams, Lucy Wilde, Hayley Crawford, Victoria Johnson, Mary Heald, Iman Hassan, Manjeet Susch, Laura Groves, Deborah Allen, Leah Bull, Bernard Dan, Jill Clayton Smith, ASSERT, Sandra Tallon (Original Director and Producer of ASSERT videos), Cornelia de Lange Foundation UK & Ireland, Cri du Chat support group, Cerebra

All of the families and individuals with genetic syndromes who were interviewed for this website (visit our ‘about me’ section to read more about these individuals)

 

Role Play Actors


Elizabeth Lloyd-Raynes, Phoebe Brown, Andrew Baker, Elisabeth Payne, Amy Gornall, Ella Jarman

 

Visual Resources


Dr. Charlie Williams at the University of Florida - Angelman Chromosome Images

bigstockpotos.com

 

Contribution of Measures


Sandra Merkel, University of Michigan School of Nursing – FLACC Scale

 

Internal Peer Reviewers


 Mary Heald, Chris Oliver, Tracey Granfield, Lucy Wilde, Hayley Crawford. Kate Woodcock

 

External Peer Reviewers


David Fitzpatrick, Jill Clayton-Smith, Mohnish Suri, Alison Male, Joyce Whittington, Jane Roberts, Kate Woodcock