Advocating for Fragile X families when members of Congress and their staff are in their home districts is key for three reasons: 1) You don't have to travel; 2) You generally have more time with them; 3) You underscore this is important to their constituents
We work closely with several groups to help on common public policy and funding goals. These partnerships are key to our impact and an important leg in our advocacy stool. Like we say, Together, We're Stronger. One of these key partnerships is the Friends of the NICHD. The NICHD is the National Institute for Child Health and Human Development. It is one of the institutes at the National Institutes of Health (NIH) and funds most of the Fragile X research at NIH. The Friends work together to support, overall, the funding level for NICHD, which flows down to each of the research areas, including Fragile X.
Even if you have never been to a Special Olympics event, you know the positive impact it has on the lives of the athletes and their loved ones. It is indescribable and hard to put into words that do it justice. You just know. It is because of this positive impact on not only those who have participated, but those who will, that we work to support and grow the Special Olympics.
The Waisman Center at the University of Wisconsin-Madison is recruiting boys with fragile X syndrome and autism spectrum disorder for a study on language and communication skills and Magnetic Resonance Imaging (MRI). The purpose of this research is to better understand how children with fragile X and children with ASD use language. All of the testing is done at the Waisman Center, and can be scheduled at your convenience.
The Modifiers of Fragile X-Associated Disorders (FX-MOD) study is trying to answer the question of why some people with Fragile X syndrome have seizures and others do not, and you can help!
The Waisman Center at the University of Wisconsin-Madison has an open position in the Post-Doctoral Training Program in Intellectual and Developmental Disabilities Research. This program has been supported continuously by NICHD since its inception in 1995, and over 95% of former trainees have obtained faculty and/or research positions relevant to IDD. The majority have successfully received extramural research funding.
The University of Colorado and Children's Hospital Colorado is conducting a research study to learn more about the guardianship experience of individuals with Fragile X Syndrome. We are currently looking for survey participants.
Advocacy Day 2019 is done, and by all measures, it was another success. Fragile X advocates visited 56 Senate offices and 61 House offices – all of their home districts. We had fun, connected with [...]
The Rocket study is a clinical research study that will help determine if an investigational medicine, called OV101 or gaboxadol, is safe and effective in treating behavioral characteristics commonly present in people with Fragile X syndrome (FXS).
As I watched the new U.S. House of Representatives be sworn in today and elect Rep. Nancy Pelosi as its new Speaker, I was reminded, again, that we are fortunate to live in a country where we can change control in Washington in the voting booth, not with tanks in the street. And when change happens, it is peaceful outside the Capital and collegial inside.
Kara and Steve Frech received the diagnosis that both of their sons inherited Fragile X Syndrome in 2006. Kara and her mother attended their first NFXF International Fragile X Conference in St. Louis, MO. Filled with information, Kara integrated and applied that knowledge into successful strategies for each of her sons. The National Fragile X Foundation has continued to provide the most up to date information and education to help with daily living.
A peer-reviewed paper has just been published that discusses a variety of recommendations at the level of preclinical development, the transition from preclinical to human projects, family involvement, and multi-site trial planning. The recommendations are made with the vision that effective new treatment will lie at the intersection of innovation, rigorous and reproducible research, and stakeholder involvement.
If you have ever spent more than 5 minutes with Dillon Kelley, you know two things—you know about Fragile X and you know that, one day, Dillon Kelley will be a member of Congress.
Steve was diagnosed with FXTAS 8 years ago, and since then, he and his family have provided significant financial support to FXTAS programming at the NFXF. They are supporting our goal to build a worldwide consortium of FXTAS clinics to help improve the rate of diagnosis and the delivery of current treatments. This will also set us up to be ready to conduct future clinical trials for new treatments.
NFXF Advocates spend time advocating with Congress for Fragile X priorities we can all get behind and have a tremendous success record: Approximately $350/million per year in research. This wouldn’t get the attention it [...]