For the third year in a row, we are partnering with Rare Disease Legislative Advocates, a project of the EveryLife Foundation, to schedule Fragile X advocacy meetings with members of Congress and their staff during the August recess. Here is what you need to know.
Rep. Eliot Engel, D-NY-16, serves as the co-chair of the Fragile X Caucus in the U.S. House of Representatives. His co-chair is Rep. Chris Smith, R-NJ-4. To help raise awareness of Fragile X for National Fragile X Awareness Day, Rep. Engel had a statement. Read the full statement here.
Please provide your comments on the draft NIH Strategic Plan for Fragile X.
On April 9, 2019, the National Fragile X Foundation provided testimony to support Fragile X research funding at the Centers for Disease Control and the National Institutes of Health. Below is Linda Sorensen's written testimony.
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
Fragile X Awareness Day is July 22, 2019, and this year we want to hear from you. You're invited to share your story about someone special in your life who is living with Fragile X.
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.
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 [...]
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.
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.
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 [...]
Early Check is a new research study, led by RTI International and a group of distinguished partners, is now available for newborn babies in North Carolina. Fragile X syndrome is included in the screening. From [...]
Several years ago, NFXF Advocates were successful in adding Fragile X research to the Department of Defense's Congressional Directed Medical Research Program (CDMRP) list of authorized research areas. Each year, the NFXF advocates for continuation [...]
In March, over 150 NFXF Advocates descended onto Capitol Hill to once again advocate for Fragile X and raise awareness among Congress. A top ask is to join efforts to support Fragile X programs at [...]