Crafts for a Cure for Fragile X Syndrome

Crafts for a Cure for Fragile X Syndrome
Handmade Magic In a far away land, the family and friends of eleven-year-old Makenzie Cote are as busy as Santa’s elves. A team of mothers, fathers, sisters, mother-in-laws, father-in-laws and friends are hard at work creating magic: handmade jewelry, hangers, wine bags, pot holders, dishcloths, slippers, greeting cards, nightlights and dolls. The operation in Canada runs as smoothly as the North Pole workshop, an assembly line of sorts, with each worker assigned a specific task, including the delivery and transport. This committed team is a labor of love, all in the name of Makenzie and finding treatments and ultimately a cure for Fragile X Syndrome. Fragile X Syndrome Makenzie was diagnosed when she was 16 months old, after her parents Dany and Josee began noticing delays in her development. Since that time, Makenzie has received special educational services and a multitude of therapies including physical, speech and occupational. Today Makenzie isRead more

Anders Zorović – A Portrait

Anders Zorović – A Portrait
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

Allison Eddy – a lovely young lady with Fragile X

Allison Eddy – a lovely young lady with Fragile X
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