Monthly Archives: June 2013

//June

What Defines a Carrier?

Why is there so much variability among male and female Fragile X carriers? There are a number of factors involved. Because the Fragile X gene is X-linked, gender plays a big role in determining who might show symptoms. Male premutation carriers, because they have only one X chromosome, are much more commonly affected by FXTAS than are female carriers.

By | 2019-04-18T15:54:00+00:00 Jun 26, 2013|Genetics|Comments Off on What Defines a Carrier?

Film "Restraint and Seclusion: Hear Our Stories"

Restraint and Seclusion: Hear Our Stories (working title) is a powerful film by Dan Habib, filmmaker at the Institute on Disability at the University of New Hampshire. While everyone agrees that all students deserve to [...]

By | 2013-06-26T16:47:03+00:00 Jun 26, 2013|Advocacy|Comments Off on Film "Restraint and Seclusion: Hear Our Stories"

Walking, Running, and Hiking for a Cause! And the 2012 Annual Report!

Focus on Fundraisers If you haven’t heard by now, we are hosting our first annual “Let ‘Em Know Virtual 5k Run/Walk for Fragile X” in honor of National Fragile X Awareness month in July! Thanks [...]

By | 2013-06-19T12:38:56+00:00 Jun 19, 2013|Appalachians, Community Support Network, Fundraiser, Northern Virginia, St. Louis, Tri Cities|Comments Off on Walking, Running, and Hiking for a Cause! And the 2012 Annual Report!

Dr. Elizabeth Berry-Kravis on the Challenges Inherent in a Clinical Trial

When a lab experiment is being done for the first time it often has to be done six or more times before everything is finally correct and it finally works reproducibly. That’s distressing and frustrating, but this is actually more the rule than the exception. For a clinical trial the stakes are so much higher. It's not just distressing and frustrating for the researchers, but it also causes real disruption and agony in the lives of real people who are a part of these trials. So when we don't "get it right" the first time everyone suffers.

By | 2013-06-10T12:19:36+00:00 Jun 10, 2013|Keeping You Informed, Seaside STX209|Comments Off on Dr. Elizabeth Berry-Kravis on the Challenges Inherent in a Clinical Trial

How Does This Virtual 5K Fundraiser Actually Work?

What is a virtual run/walk? A virtual run/walk is pretty simple. You sign up and we mail you the official T-shirt and race bib. Then you and everyone from everywhere choose your own date, time and place to do your running or walking in the month of July.

By | 2013-06-05T09:22:48+00:00 Jun 5, 2013|Awareness Day|Comments Off on How Does This Virtual 5K Fundraiser Actually Work?