• Shop
  • Contact
  • You Can Help
  •  GIVE MONTHLY

Blog Home Page (News)

Home/Blog Home Page (News)
Blog Home Page (News)2021-01-26T17:34:03-05:00

The NFXF Blog

SUBSCRIBE

The good stuff from 2020 (no really there is some)

By |Dec 15, 2020|

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

By |Dec 10, 2020|

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.

The Launch of the International Fragile X Premutation Registry

By |Nov 12, 2020|

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

By |Nov 10, 2020|

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.

Survey: Cannabidiol (CBD) Use with Fragile X Syndrome

By |Nov 10, 2020|

A Mount Sinai Genetic Counseling graduate student is conducting a research study to learn about possible benefits and side effects of CBD supplements when used to treat FXS symptoms. This information will be obtained by using an anonymous online parental and caregiver survey.  About the Survey ...

NFXF Advocacy in 2021

By |Nov 5, 2020|

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

By |Oct 30, 2020|

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

By |Oct 29, 2020|

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.

Load More Posts