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Jayne

Home/Jayne Dixon Weber

About Jayne Dixon Weber

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So far Jayne Dixon Weber has created 14 blog entries.

Were New Fragile X Genes Discovered?

By |2019-04-24T14:44:13-04:00Apr 24, 2019|Keeping You Informed, Research|

A conversation with David L. Nelson, Ph.D., a Professor at Baylor College of Medicine and a member of the NFXF Scientific Advisory Council. He is a co-discoverer of the FMR1 gene and the repeat expansion mutation that causes fragile X syndrome. He is answering questions about a recent study published in the journal Molecular Psychiatry and an accompanying press release about the paper from Northwestern University’s Feinberg School of Medicine. The headline of the press release claims, "New Fragile X Genes Discovered."

You Are Never Too Old to Wear a Pink Tutu … and Other Lessons Our Son Has Taught Our Family

By |2020-11-07T11:18:52-05:00Oct 26, 2016|Education|

Like many of you, I will always remember the day and time when I received the diagnosis of our son, Ian. Fragile X syndrome – never heard of it. We had the good fortune of being able to meet with Dr. Randi Hagerman and Amy Cronister, a genetic counselor, the week after we received our diagnosis. I also remember meeting Mouse and Tracy. They were all working in Denver at the time. My take-away from that initial appointment was I realized this was a big deal, and it was not going to go away. In hindsight, I had no idea about the magnitude of the people I was meeting. My head was spinning.

Getting and Keeping a Job

By |2021-02-11T12:25:55-05:00Feb 3, 2016|Treatment and Intervention|

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.