Professor Felicity Boardman is seeking Fragile X families to participate in a filmed interview about life with Fragile X- can you help?
Last year, Professor Felicity Boardman and colleagues from Warwick Medical School undertook some research on the views of families living with fragile X conditions towards screening. A report on the findings of that study can be found here.
In order to encourage the general public to think about genetics, an art installation has been developed out of the research findings, by a theatre and media production company, STAMP. This art installation, called I:DNA, has been touring the UK. You can find more information about it here.
During the pandemic, however, visitors will no longer be able to attend the art installation in person. As such, Professor Boardman and colleagues are developing some online content to support the installation. They hope this will expand the number of people who can view I:DNA, even if they can’t attend in person.
Professor Boardman says, 'To help us create this online content, we are looking to conduct a filmed interview with a parent of a child with fragile X syndrome, or with a fragile X condition in their family. The interview would explore various aspects of daily/family life with a fragile X condition as well as any impacts from the COVID-19 pandemic.
The interview could be filmed in your home, at a location close to you, or it could be filmed outside if needed. The resulting film will be posted on the I:DNA website, its YouTube channel, and also social media to encourage viewing. It will be shown at any future exhibits of the I:DNA art installation.
In acknowledgement of their time and effort, the participant will be paid a fee of £100 for their filmed interview.'
If you are interested in being considered for an interview, please contact Felicity directly at Felicity.Boardman@warwick.ac.uk with a brief summary of your background (age, gender, relationship to fragile X) as well as your geographical location. Thank you!
Here's what visitors to the I:DNA exhibition have had to say:
"I never thought I would be so touched and impressed with an exhibition quite like this one. I am incredibly thankful for having seen it."
"It's so important to give a platform to the voices that never get heard - and even better when presented in a creative way!"
"It's allowed me to look at something from a new perspective that I didn't actually think was relevant to me."
"Haunting and beautiful - really hooks you in."