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.
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01, 2021
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5
01, 2021
Is the COVID-19 Vaccine Safe for Individuals with Fragile X?
Dr. Craig Erickson, director of the Cincinnati Fragile X Research and Treatment Center at the Cincinnati Children's Hospital, received his first dose of the COVID-19 vaccine tells us why it’s safe.
16
12, 2020
Understanding Autism Spectrum Disorder in Fragile X Syndrome
Consensus of the Fragile X Clinical & Research Consortium Understanding Autism Spectrum Disorder in Fragile X Syndrome Reading Time: 59 min.—|—Last Updated: Dec 2020—|—First Published: Nov 2014—|—Download PDF [...]
16
12, 2020
Fragile X Advocacy in 2021
Gregg Harper discusses NFXF advocacy successes from 2020, 2021 Advocacy Day, and more.
12
11, 2020
NFXF Research Readiness Program
NFXF Research Readiness Program Our mission has always been and continues to be providing unwavering support for every family affected by Fragile X, while relentlessly pursuing a cure. As a patient advocacy organization [...]
12
11, 2020
NFXF-Led Patient-Focused Drug Development Meeting
March 3, 2021 The NFXF-Led Patient-Focused Drug Development Meeting for Fragile X Syndrome Voice of the Patient Meeting Report Meeting Recording — A recording of the entire meeting is now available, on demand. [...]
12
11, 2020
NFXF Data Repository
NFXF Data Repository Qualitative Survey Data Now Available! The NFXF Data Repository was created to help advance Fragile X research by making previously inaccessible, collected data available to researchers and investigators. By centralizing data [...]
11
11, 2020
FORWARD-MARCH Registry & Database
FORWARD-MARCH — Now Open for Enrollment! A Brief History of FORWARD What is FORWARD-MARCH? Who Can Participate in FORWARD-MARCH? What Does Participation in the Study Look Like? How Can I [...]
14
10, 2020
Fragile X and Face Masks (Not What FXFM Stands For)
Looks like the wearing of face masks is here to stay for a while, so you may as well try to have some fun with it. I know, I know – they are not that fun. But, I did have a parent send me a link to a mask that has a chew cord as part of the mask. I just love how creative people are.
15
09, 2020
The Sarup Family
The Sarup Family For the fourth consecutive year (2017–2020), the Sarup family has held an #AnythingForFragileX fundraiser, raising over $50,000 for the National Fragile X Foundation while helping to raise awareness for Fragile X. [...]