It’s All About Employ-Ability!
Paula Fasciano and friends opened Bake Ability so they could give employment opportunities to individuals with intellectual and developmental disabilities.
An Update on Our Advocacy Efforts
An update on our advocacy efforts, including Advocacy Day 2022 and key legislation we are currently supporting.
The National Fragile X Foundation Joins Forces with the New CEO Commission on Disability Employment
The National Fragile X Foundation joined forces with the new CEO Commission on Disability Employment so we can work together to eliminate barriers to employment for all individuals with a disability.
Advocacy Day Social Story
Our own Jayne Dixon Weber pulled together a social story to use to help you and your self-advocate prepare for the NFXF Advocacy Day on February 24, 2021.
What are Federal Budgets and Why They Matter
What is the President's budget, is it important for Fragile X advocacy, and how does Fragile X research get funded? These are all answered here.
What Does a New Congress Mean for Advocacy
As the Biden Administration takes office and Congress switches control, what does it mean for NFXF Fragile X Advocacy efforts?
Camping and Fragile X
Because of the hard work of NFXF advocates over the past 20 years, decision-makers in Congress know what Fragile X is. Being present, persistent, and problem-solving is what gets things done in Congress.
Life with Fragile X: Who is Helping Who?
We’re always looking for new ways to share and raise awareness about Fragile X, life with Fragile X, and the individuals and families it affects. Here we talk with Laura Dooling and her life with three cousins with Fragile X syndrome.
How to Advocate for Fragile X
Gregg Harper, a former Member of Congress, gives you 3 tips to effectively advocate for Fragile X in Congress and anywhere else in government.
What a successful year for NFXF Advocates
NFXF Advocates have had a very successful year! Our advocacy efforts focus on ensuring substantial federal investments in Fragile X research, policies that create opportunities for those living with Fragile X to have the best possible life, and an awareness in Congress of Fragile X. Here are some highlights of our efforts this year.
Fragile X Advocacy – August Recess Visits
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. Engel Raises Fragile X Awareness in Congress
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.
Provide Comments on the NIH Strategic Plan
Please provide your comments on the draft NIH Strategic Plan for Fragile X.
NFXF Testimony to House Appropriations Committee
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.
Fiscal Year 2020 NICHD Funding Letter
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.