The COVID-19 Vaccines and Fragile X
Dr. Craig Erickson held a webinar on the COVID-19 vaccines for individuals living with Fragile X premutations and full mutations. He also covered COVID-19 vaccine safety in general.
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?
Fragile X Advocacy in 2021
Gregg Harper discusses NFXF advocacy successes from 2020, 2021 Advocacy Day, and more.
The good stuff from 2020 (no really there is some)
I like to talk about #pandemicPositive – there is plenty that has been hard(er) this year, but we have also seen lots of good. So, I polled my fellow staff members for some examples of the impact we all made this year through your support.
Webinar: Adults in Fragile X Syndrome
Dr. Elizabeth Berry-Kravis discusses the value of the FORWARD database for understanding problems that face adults living with Fragile X syndrome. We also talk about how families of adults can contribute to FORWARD and our understanding of adults with FXS by doing a research-only remote visits with a FORWARD clinic to increase the data pool for adults with FXS in FORWARD.
Allos Pharma Inc Announces the Exclusive License Rights on Arbaclofen in Fragile X Syndrome
Allos Pharma Inc, a late-stage pharmaceutical company developing therapeutics for neurodevelopmental disorders, has announced the exclusive license rights on arbaclofen in fragile X syndrome (FXS).
The Launch of the International Fragile X Premutation Registry
Now you can explore the International Fragile X Premutation Registry page on the NFXF website. You will find information about the Registry, a Frequently Asked Question section, the pictures and biographies of the Advisory Committee, and the “Enroll Now” button. The “Enroll Now” button will take you to the HIPPA-compliant REDCap database where your information will be stored.
Help Expand Telehealth Options
The TREAT Act works to resolve this. The Temporary Reciprocity to Ensure Access to Treatment (TREAT) Act was introduced in the Senate by Senators Roy Blunt (R-MO) and Chris Murphy (D-CT). The legislation provides temporary licensing reciprocity for health care professionals in good standing during COVID-19 and future national emergencies.
NFXF Advocacy in 2021
Gregg Harper, Fragile X dad, former member of Congress for Mississippi's 3rd Congressional district, offers a message to all Fragile X families following the 2020 election, looking forward to NFXF advocacy in 2021.
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.
Sneak Peek at the International Fragile X Premutation Registry
The International Fragile X Premutation Registry will help us learn about the Fragile X premutation and will build community and develop a group of individuals interested in participating in research. Learn more in this video from Dr. David Hessel of the University of California, Davis MIND Institute.
Exploring the Most Important Information for New Premutation Carriers
Participants of this study will explore what information is considered most important to recently diagnosed fragile X premutation carriers. Open to premutation carriers 18 and over who were diagnosed sometime since January 2018.
Parents and Caregivers of Adults with Fragile X Syndrome Needed for a Survey
Kaylynn Shuleski, a master’s in genetic counseling candidate, is conducting a research study to explore the concerns and challenges caregivers may face when planning long-term supports and living arrangements for their adult children with Fragile X ...
