Thank you for your interest in being a media volunteer for SWAN UK/Genetic Alliance UK.
By talking about the impact your child’s undiagnosed condition has on your family life you will help raise awareness among the general public and reach out to other families who could benefit from joining the SWAN UK community.
This document tells you what you can expect as a media volunteer. It will explain the process and give you the chance to let us know about anything particularly sensitive that you would prefer not to talk about. Also, if an interview is arranged, we would be happy to guide you beforehand on what might be advisable to say or not to say!
If you have any questions about this document or about being interviewed please contact Lauren, the
SWAN UK project coordinator on 0207 704 3141 ext 110 or by email
SWAN@geneticalliance.org.uk.
One of SWAN UK’s Advisory Committee, Jane Gregory, is a journalist and also the parent of a disabled daughter (who was undiagnosed until in her early 20s). Jane, who our Facebook members and Twitter followers may know, will be the main journalist working with us and with you. She has written about a range of topics for women’s magazines and newspapers, including the Daily Mail, the
Mirror, the Daily Express, Woman, Take-a-break, Essentials and Woman’s Own. However, her main area of interest is, of course, anything to do with learning disabilities – particularly rare or misunderstood conditions. You can see examples of Jane’s articles and find out more about her work by visiting her website: www.sharingstories.co.uk
, and read about her daughter on her blog: http://jgregorysharingstories.blogspot.com/
Please read through this document and fill in your details where asked. Please sign at the bottom to show you have read and understood the process and are happy to be involved.
By talking to the media you can help raise awareness of the issues faced by you and families like you. It will help us reach out to other families and interested professionals that would benefit from being part of the SWAN UK community. Many people find it hard to believe that with all the medical advancements in today’s society there are still children who are undiagnosed. By being a media volunteer you can help to dispel such myths.
By becoming a media volunteer you are agreeing to talk about your experiences of being a parent of a child with an undiagnosed condition.
It is likely that you will also be asked to provide photos of you and your child (or have your picture taken).
Most newspaper and magazine editors prefer stories about subjects like disability to be upbeat.
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Genetic Alliance UK: Unit 4D, Leroy House, 436 Essex Road, London, N1 3QP
020 7704 3141 contactus@geneticalliance.org.uk
Charity registered in England and Wales (no. 1114195) and in Scotland (no. SC039299)
Company limited by guarantee, registration no: 05772999 www.geneticalliance.org.uk

Remember to talk about all the amazing things your child does and how proud the smallest achievement can make you.
You are also likely to be asked about the impact the lack of a diagnosis has on your family life and the challenges it presents.
You may want to talk about specific issues that you are having problems with, such as access to respite or support in school.
If you are asked a question you would prefer not to answer do let the journalist know.
Jane Gregory will read the article back to you to check facts and ensure that you agree with what has been written.
If you have any questions please get in touch with either Lauren, the SWAN UK project coordinator on
0207 704 3141 or SWAN@geneticalliance.org.uk.
If you would like to go ahead with becoming a SWAN Media Volunteer, please complete the details below then sign and return in the enclosed SAE. Please keep one copy of this form for your own records.
Parents Name
Contact Details
Undiagnosed Child’s name
Undiagnosed Child’s
Age
Undiagnosed Child’s
Needs
Number of other children in the family
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Genetic Alliance UK: Unit 4D, Leroy House, 436 Essex Road, London, N1 3QP
020 7704 3141 contactus@geneticalliance.org.uk
Charity registered in England and Wales (no. 1114195) and in Scotland (no. SC039299)
Company limited by guarantee, registration no: 05772999 www.geneticalliance.org.uk

Are there any issues you don’t want to talk about?
Are there any specific areas you are having issues with that you do want to talk about?
Is there any additional info you think would make your story particularly interesting?
I have read and understood the above.
I understand that Genetic Alliance UK / SWAN UK have no control over how the journalist/editor choose to represent any stories published.
I understand that by signing I am agreeing for my details to be passed onto Jane Gregory who may then contact me to discuss potential stories.
I understand that my volunteering does not guarantee I will be contacted or my story will be published.
Print Name _______________________________________
Signed ___________________________________________
Date _____________________________________________
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Genetic Alliance UK: Unit 4D, Leroy House, 436 Essex Road, London, N1 3QP
020 7704 3141 contactus@geneticalliance.org.uk
Charity registered in England and Wales (no. 1114195) and in Scotland (no. SC039299)
Company limited by guarantee, registration no: 05772999 www.geneticalliance.org.uk