Tonight, on April 23, NFXF Executive Director Robert Miller and NFXF Founder Randi Hagerman will be headed to Palo Alto, CA to join a roundtable discussion with other experts on autism and special needs. The [...]
After three months of treatment with minocycline, children with Fragile X syndrome had greater improvements in general behavior, anxiety and mood-related behaviors, when compared with children with Fragile X syndrome who received placebo rather than the medication. The study was led by Mary Jacena Leigh, associate clinical professor of behavioral and developmental pediatrics with the Fragile X Treatment and Research Center at the MIND Institute.
Be sure to leave a comment below to wish Robby a Happy Birthday!
The NFXF is honored to have been asked by the John Merck Fund to help share the exciting news about two new million-dollar grants for treatment related research in Fragile X syndrome. Both grants go [...]
We’ve all heard about the Affordable Care Act. (Often referred to as “Obamacare.”) What will it mean for individuals with Fragile X syndrome or their families? What about those with FXTAS or FXPOI? Will it [...]
Autism Speaks, the world's largest autism advocacy organization, recently released it's Top Ten Autism Research Advances of 2012. Included in this list is Fragile X research, mainly two drug studies of Arbaclofen. This is a [...]
Robert Miller Executive Director National Fragile X Foundation Here in the Fragile X world we spend a lot of time parsing mutations, CGG repeat numbers and trying to define Fragile X. From a [...]
Dr. David Hessl of the UC Davis MIND Institute will be undertaking a project to extend autism behavioral intervention to young children with Fragile X syndrome. And Dr. Stephanie Sherman at Emory University is attempting to better understand the health consequences of the FMR1 premutation in women.
Robert Miller Executive Director National Fragile X Foundation In the months to come, the NFXF will continue to roll out the latest information from the 13th International Fragile X Conference. This was not [...]
The NFXF is pleased to see the media attention surrounding the latest news resulting from clinical trials for Fragile X syndrome treatments. Two members of the NFXF’s Scientific and Clinical Advisory Committee, Dr. Randi Hagerman, the NFXF’s co-founder, and Dr. Elizabeth Berry-Kravis, also a member of the NFXF’s Board of Directors, have been receiving prominent mention. The NFXF has been pleased to be able to assist its corporate partner, Seaside Therapeutics, with recruitment for this trial and others.
Dr. Peter Todd, assistant professor in Neurology and co-director of the FX clinic at the University of Michigan thinks the study findings hold significant promise. “This is an interesting finding of a compound that has [...]
Hello everyone. I know that many of you are preparing for your trip to the 13th International Fragile X Conference in Miami. This is my 7th conference as executive director but I am as excited now as I was for that first one back in 2000. (Los Angeles) I also know that many of you will not be able to join us this year. For both groups, I want reassure you that we will do our best to see that much of the conference content is made available in the months following the conference. While that doesn’t replace the incredible value of the connections that are made when you can attend in person, it is still our goal that everyone has access to the latest information.
Robert Miller Executive Director National Fragile X Foundation Some of you may have recently read an online commentary by nationally syndicated, Foxnews.com columnist Dr. Manny Alvarez. Not only does “Dr. Manny,” as he [...]
An online Reuters article, published earlier today, and titled “New drugs, fresh hope for autism patients” along with the photographer’s blog entry, called “Living with Fragile X” and a Full Focus post, Reuters [...]
NFXF Executive Director Robert Miller, parent and NFXF Director of Public Policy and Government Affairs Jeffrey Cohen and parent Tamaro Hudson just returned from a two-day meeting in Washington, DC where they helped update the [...]
