When parents first learn about Fragile X, their primary focus is on the meaning of the diagnosis for their child with the syndrome. Once the dust settles though, they begin to think about the genetic implications for other family members, and in particular, for typically developing siblings who may or may not carry a Fragile X mutation.
On March 2-3, 2016 the NFXF held its 13th Annual Advocacy Day in Washington, D.C. It was a resounding success was attended by 150 advocates from 30 states. This included a record number of siblings and self-advocates who have rapidly become some of the most enthusiastic and impactful advocates for Fragile X.
A concern many parents have for their children is whether or not their children will be able move out of the house and to live on their own. The process that mother and CSN leader Anita Inz went through was a difficult challenge, but now her son lives happily in an independent living community with support. She joins us for our upcoming webinar to talk about her experience and her son’s’ current living situation, to help give you an idea of how to navigate the world of independent living.
(Berlin/Sacramento) The International Fragile X Alliance (IFXA), a global network of Fragile X parent support organizations, was launched on February 29, 2016. IFXA will work to improve the life situation of people with the most common inherited form of intellectual disability, Fragile X Syndrome, as well as other Fragile X-associated Disorders.
It was late summer and Ian was 18 years old and he was getting ready to start the transition program at his high school, a program for students 18-21 years old after they graduate from high school. I had to figure out how to make this work.