A brief thank you film to people involved in the project
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 group, Cri du Chat syndrome support group, ASSERT, Fragile X Society, Prader-Willi Association, Cornelia de Lange Association UK & Ireland, Smith-Magenis Foundation; UNIQUE
Funding
Birmingham Community Healthcare NHS Trust
Economic and Social Research Council (ESRC)
Website Content and Development Lead
Website Concept
Webdesigners
Content Development Team
Effie Pearson
Poonam Virdee
Georgie Agar
Laura Groves
Manjeet Susch
Iman Hassan
Hannah Ramshaw
Miriam Chaudhry
Amna Karim
Edward Ingram
Julie Shackleton
Website Administrators
Jane Waite, 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, Poonam Virdee, 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
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, Raoul Hennekam, Joyce Whittington, Jane Roberts, Kate Woodcock