Caregiver for Fragile X

My name is Katie Quinn, and I have just started a PhD looking into Fragile X and the impact of being a caregiver for this condition.

Katie Quinn

My background includes an Undergraduate degree in Biological Sciences and a Masters in Sustainability (both with Queen’s University Belfast). I have worked as a lab technician with Professor Amy Jayne McKnight for the last three years. Amy Jayne works with Rare Disease in NI and during my time on the team I have developed a strong interest in caregiving and caregiver experiences. Furthermore, Fragile X runs in my family.

The main aim of my project is to explore the impacts of caregiving for Fragile X, a rare condition which can often make families feel isolated in their caring experiences.

So far, I have mainly been reading literature and am currently carrying out a large review of available literature around caregiving for Fragile X. I am hoping that findings from this will help me to define a few themes, which I would like to include in a press release of some sorts coming up to Fragile X Awareness Week in October. This is also the charities 35th birthday- so a great opportunity to mark the occasion.

I would like to chat to any family members who are in contact with the Fragile X Society about possibly taking part in the press release, through sharing their experiences and possibly doing a short interview for radio. The main aim of these two things is to build awareness in NI and to build momentum with the Fragile X community to hopefully get more families taking part in events in Northern Ireland.

If anyone is interested in having a chat about this, I would really appreciate if they could reach out or provide me with contact information. My email address is k.quinn@qub.ac.uk

Many thanks,

Katie