There is nothing we can’t do!
My greatest reward from my journey with 2 boys ( Matthew is 14 and Benjamin is 8 ) with Fragile X is that my mantra has become "There's nothing we can't do!" Since Matthew's diagnosis [...]
28
06, 2011
Need a new search?
If you didn't find what you were looking for, try a new search!
28
06, 2011
Never Give Up
In the spring of 2003, Parker (then 3 1/2) & Allison (7 mo) were diagnosed with Fragile X. In many ways, the diagnoses greatly changed who we are. We went from a family who had [...]
28
06, 2011
Cape Cod Vacations and College Plans
Patrick, 19 non verbal, affected, full mutation with sister, Kelley, 17, full mutation at the beach last summer. This picture involves one of Patrick's favorite things to do with his family. We go to Cape [...]
28
06, 2011
Jack the teacher
When our son Jackson was diagnosed with Fragile X Syndrome before his third birthday, we went through many emotions. It took awhile to accept that "God doesn't give you anything you cannot handle" and "Everything [...]
31
05, 2011
The Fabric of Fragile X
Facebook, Twitter, email, blogs, conferences, seminars, group barbecues and long phone conversations. What do these have to do with each other and with Fragile X? They are all places where one can go, or tools [...]
14
04, 2011
Advocacy Action Alert: Write Your Legislators about TEAM
Here's your chance to step-up and take action. Representative Gregg Harper has already introduced the TEAM Act package of bills for his son and for all of our family members and friends impacted by FX. [...]
7
01, 2010
Fragile X Premutation and FXPOI
Analysis of Ovaries from FMR1 CGG Repeat Mice Research Summary: National Fragile X Foundation – Translational Research Grant Renate Hukema PhD - $50,000 Erasmus MC, The Netherlands SPECIFIC AIMS: The CGG repeat sequence located in [...]
21
07, 2009
NIH Issues Research Plan on Fragile X Syndrome and Associated Disorders
The National Institutes of Health has developed a research plan to advance the understanding of Fragile X syndrome and its associated conditions, Fragile X-associated tremor/ataxia syndrome and Fragile X-associated primary ovarian insufficiency. Fragile X syndrome [...]
7
01, 2009
A Double-Blind Randomized Controlled Cross Over Trial of Minocycline in Children with Fragile X Syndrome
Research Summary: National Fragile X Foundation – Translational Research Grant Randi Hagerman MD - $100,000 UC Davis MIND Institute This project will study the efficacy of the antibiotic drug minocycline for children ages 4 to [...]
7
01, 2009
Examining genetic and pharmacologic rescue strategies for excessive PI3K signaling in FXS
Research Summary: National Fragile X Foundation – Conquer Fragile X Basic Science Grant Christina Gross PhD - $30,000 Emory University School of Medicine Signal transmission in the brains of FXS patients is severely impaired. This [...]