Every 2 years the National Fragile X Foundation organizes the International Fragile X Conference. People travel from all over the world to hear about new research, connect with other families affected by FXS and learn more about all facets of Fragile X. With limited resources and support services offered in Saskatchewan, this conference has been a wealth of opportunity for my sister to learn more about Fragile X Syndrome (as well as medical conditions related to Fragile X carriers, such as myself). Attending this conference is a benefit not only for the wellbeing of my nephew (who has Fragile X Syndrome) but also other families in Saskatchewan affected by FXS. My sister provides education and awareness sessions based on what she has learned at these conferences and is able to better support questions we receive from newly diagnosed families in Saskatchewan. Having the opportunity to connect with specialists, medical professionals, and researchers in the field of Fragile X Syndrome is invaluable. New information about therapies and daily living techniques have aided in improving the quality of life for my sister’s son. However, the cost of attending this conference is high. With the registration cost at just over $500CDN, flight costs (as the conference is held in the USA) and the costs of hotel and food, the total is over $2000.00 per person for this 5 day conference. As such, I'm asking that you help me help my sister cover the costs of attending the 2014 International Fragile X Conference. The conference runs July 16-20 but I am going to leave the donations open longer in order to help pay off the cost. Every little bit helps!
Thank your for your help! To learn more about Mandie & Colton and Fragile X Syndrome, please visit www.fragilexsask.ca,
our facebook page (Fragile X Saskatchewan) or our twitter account @fragilexsask.