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New Irish Research Study for Carriers of FMR1 Premutation

Niamh Mc Devitt a researcher from Trinity College Dublin is looking for people between the ages of 28 and 50, who carry the genetic premutation for Fragile X Syndrome (FXS) to take part in a new research study. The study aims to look specifically at how being a carrier can affect the brain, specifically looking at things like memory, attention and motor abilities.

There is very little research in this area in Ireland and the aim is to change that, by shedding light on this premutation that affects approximately 1-150 people worldwide. Learning more about how this premutation works, will help not only understand carriers, but may help us to understand the full mutation which leads to FXS, as well as the related disorders such as Fragile X Associated Tremor/Ataxia (FXTAS).

If you would like to take part or are interested in learning more about this research: Do not hesitate to contact Niamh Mc Devitt, Phone: 0861634105, Email: mcdevitn@tcd.ie.

International Fragile X Conference July 2016

Mark your calendars on July 20-24, 2016, for the
15th International Fragile X Conference in
San Antonio, Texas at the Marriott Rivercenter!

The National Fragile X Foundation’s biennial international conference presents a unique opportunity where researchers and parents can interact throughout the conference. Many researchers have commented on the experience of socializing with the parents of children with Fragile X, and how the experience has motivated them or reinvigorated their enthusiasm to make a difference in the lives of persons with this disability. The majority of the conference sessions are “Family-Friendly” and cover all three Fragile X-associated Disorders (FXS, FXTAS, FXPOI), with the greatest number of sessions focusing on FXS. In addition to the family-friendly sessions there are many scientific and technical sessions. Some of the benefits from attending include:

  • Discover the latest research by some of the world’s leading Fragile X experts.
  • Learn new techniques, behavioral interventions and coping strategies.
  • Connect with researchers, clinicians, educators, psychologists and parents.
  • Get the support you need.
  • Start new lifelong friendship and reconnect with old friends.

- See more at: https://fragilex.org/community/international-fragile-x-conference/#sthash.fia6WkeW.dpuf

Wexford farming couple on how Fragile X has affected their lives

Margaret and Paul Nolan had never heard of Fragile X when their two young sons were diagnosed with it in 2004. They spoke recently to the Irish Farmers Journal about their lives since then and about some of the benefits of life on the farm for Liam (10) and Sean (8). Read the full article here. http://fragilexireland.org/wp-content/uploads/2013/01/irishfarmersjournal.pdf