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Students with Fragile X Syndrome can often be like the proverbial girl with the curl in the middle of her forehead – when they’re good, they’re very, very good, and when they are bad they are horrid. Knowing these 10 things will help bring out the good and minimize the horrid! The #1 . . . » Continue reading Thanksgiving is right around the corner, and for most people that means spending time with family while enjoying great meals, good times, and a big helping of gratitude. Then comes Black Friday, the day when stores nationwide have blowout sales and people line up around the block for the best deals. After that . . . » Continue reading The LINKS Support Network is a wonderful way to get involved in the Fragile X community on a local level, to meet new families, share experiences, work together to raise awareness, advocate, fund raise, build friendships and most importantly, be a part of the support for families just like yours. Visit our LINKS . . . » Continue reading
Here in the Fragile X world we spend a lot of time parsing mutations, CGG repeat numbers and trying to define Fragile X. From a medical and scientific point of view, that effort is necessary so that clinicians and researchers can communicate with each other in a descriptive and . . . » Continue reading Join us at Shelburne Farms, on Sunday, October 14, 2012 beginning at 11:45 AM, for the Fragile X LINKS Group of Eastern Massachusetts Fall Family Social! Each child will receive a quarter-peck apple picking bag and a small pumpkin. We have reserved a tented picnic area from 11:45 to 1:15; please feel free to . . . » Continue reading Seaside Therapeutics of Cambridge, MA along with Hoffman-La Roche announced their landmark alliance today to advance treatment for fragile X syndrome and autism spectrum disorders. The National Fragile X Foundation shared the press release on their website earlier today and plan to add additional commentary later this afternoon. Be sure to stop in and . . . » Continue reading We are very excited to announce the details of our first conference! There is only room for 200 people so please register ASAP! Hyperarousal & Sensory Integration Strategies for Home and School Date: Saturday, April 14, 2012 Time: 8:00 AM – 4:00 PM Where: Arthur and Martha Pappas Amphitheatre University of . . . » Continue reading Fragile X Educational Conference Hosted by: Fragile X LINKS Group of Eastern Massachusetts Fragile X Resource Center of Western Massachusetts Saturday, April 14, 2012 Featuring Special Guest Speakers Tracy Stackhouse and Mouse Scharfenaker from Developmental FX! Tracy and Mouse will be speaking about core issues in fragile X syndrome with a focus on understanding . . . » Continue reading Eric & I will be leaving for Washington D.C. on Monday, March 8th in order to participate in the National Fragile X Foundation’s annual Advocacy Day event. This will be our second year attending. If anyone would like to write letters for us to deliver we would love to be able to do so. . . . » Continue reading Sorry for the short notice but we just learned that Dr. Len Abbedutto, PhD, Director of the MIND Institute, UC Davis, will be presenting at UMass Department of Psychiatry Grand Rounds from 12 PM to 1 PM. Dr. Abbedutto’s topic will be “Fragile X Syndrome and Language Development: Phenotype, Variation, Mechanisms and Treatment.” Grand . . . » Continue reading |
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