Meet #FriendofFRAXA Andy! If you would like to nominate someone as a #FriendofFRAXA, simply email a photo accompanied with age, location, and a few of his or hers interests and challenges to firstname.lastname@example.org. We welcome all who have been touched by Fragile X, including friends, grandparents, siblings, professionals and companions alike.
#FriendofFRAXAInterestsSwimming, watching/collecting movies, reading books, playing mini golf, playing Wii, and being with his family. ChallengesThe dentist, thunder and other loud noises. Become a #FriendofFRAXAIf you would like to nominate someone as a #FriendofFRAXA, simply email a photo accompanied with age, location, and a few of his or hers interests and challenges to email@example.com. We welcome all who have been touched by Fragile X, including friends, grandparents, siblings, professionals and companions alike. Zack Miraglia, 15, of Danvers, MAon 02 April 2018Zack Miraglia, 15, of Danvers, MAon 02 April 2018Andy Tranfaglia: an Adult with Fragile X Syndromeon 13 June 2013Andy Tranfaglia: an Adult with Fragile X Syndromeon 13 June 2013Meet Andy!on 15 October 2018Meet Andy!on 15 October 2018Read more
“Well, I have Fragile X” Simon is weird and wonderful. He’s friendly and curious and talks non-stop. He’s an athlete and an artist. He’s unbelievably generous and crazy stubborn. He often repeats sentences. When his mom reprimands him for something, he’ll say, “Well I have Fragile X.” His next sentence is often, “I want to get rid of it.” Sometimes he says, “It’s your fault.” What Simon needs most in the world is cable TV, the Internet, and food his mother disapproves of. He loves his room: dark and private and equipped with many screens. He loves babies and pretty girls. He is obsessed with Danica Patrick (but that’s supposed to be a secret). He would like to drive but understands that he needs to learn to read first. “That’s too hard,” he says. What he needs most in the world is love and acceptance: from his family, his friends,Read more
Niklas is a 19-year-old who exemplifies the spirit of love and happiness in all he does. While he was diagnosed at just 16 months with Fragile X, we have never let it define who he is, but merely offer insights into his world and how he experiences it.Looking back, probably the most difficult years were before his speech developed. He was extremely frustrated that he was unable to communicate his needs. Even with the support of Early Intervention, he did not begin to sign until age 2. We will never forget the turning point in our lives, when we realized how truly intelligent Niklas was, and how we, as his parents, had to re-train ourselves, to better understand how he thinks and perceives the world around him. Niklas used to have emotional outbursts when leaving our house and driving out of our neighborhood. Being “typical” we were not bright enoughRead more
Luke wakes up every morning with a smile on his face. And that joy stays in his heart all day long. Except when it’s time to turn the tv off, shut down the ipad, or close the dvd player. Then all hell breaks loose. He yells and screams and carries on until I either have to give him a time out or I hold the beloved device in my extended arm and promise to give it to him if he calms down and stays calm for a period of time. But as he continues to grow taller, stronger, and more clever, it gets harder to end the conflict with the desired outcome. He is a master jigsaw puzzle solver and sees patterns in the pieces rather than solving it by following the pictures. He often does puzzles upside down. I was explaining this to someone recently while we were watching
June 2017: Andy and his dad, Dr. Mike Tranfaglia Andy is 29 years old now. He lives at home with us, his mom and dad, two cats, and a dog. He can understand most of what people say, but is usually too anxious to let you know. He will cover his face whenever someone walks into the room - even his mom or dad! Andy attends a supported farm program most days, and the minute he is out of the house, we rush off to work at FRAXA. We don't know what the future holds, but we hope for great things for Andy. We try to teach him basic skills to increase his independence in the future, but realistically, we don't leave him alone for even 15 minutes at this point. What do you call a babysitter when you need care for a 29-year-old? There is an image of Andy I canRead more
by Leslie Martini Eddy Saša Zorović first learned his son Anders’ had Fragile X syndrome when he was four years old. The diagnosis hadn’t come easily. Anders had been tested for Fragile X a year earlier and the results were negative. “We are not sure to this day why that happened. His geneticist suspected Fragile X and ordered the test, but it came back negative. We continued seeing other doctors and specialists, trying to get an understanding of what Anders had,” Saša said. A year later, another geneticist took a look at Anders and said with certainty, “He has Fragile X.” After a thorough examination of Anders and sorting through previous reports, another test was ordered. This time it came back positive. Anders had Fragile X after all. Anders showed symptoms of Fragile X early on. At 9 months, his very low muscle tone prevented him from sitting up straightRead more
Dear Friends: Two decades ago, our baby daughter Allison was diagnosed with Fragile X Syndrome. We tested her after learning that her cousin, my then three-year-old nephew Grant, had Fragile X, a disease no one seemed to have heard about. That same year when I learned that FRAXA Research Foundation was already recruiting the world’s top neuroscientists to study Fragile X. Two decades later, the neuroscience world is buzzing about this leading cause of autism, and more research proposals than can be funded are flowing in. Alliances with top pharmaceutical companies have led to promising treatment strategies, investigational drugs, and clinical trials of new treatments. FRAXA has become a role model for other medical nonprofits, attracting the attention of scientists and pharmaceutical companies around the globe. “I have interacted with FRAXA since 2006, acting as a researcher working in development of new medicines for Fragile X Syndrome. What attracted me to FRAXA isRead more