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

By |2020-12-17T12:54:19-05:00Dec 15, 2020|Blog|

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 |2021-02-12T13:43:55-05:00Dec 10, 2020|Blog, Webinar|

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.

Sneak Peek at the International Fragile X Premutation Registry

By |2020-10-29T14:13:33-04:00Oct 29, 2020|Blog, Research|

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.

From One Caretaker to Another

By |2020-09-02T15:13:11-04:00Aug 6, 2020|Blog|

Being the caretaker of someone with special needs, such as Fragile X syndrome, can be daunting. Isabel looks back at her journey, sharing advice and encouragement for new caregivers or those who have been doing it for years.

Shining a Light on NFXF’s Global Impact

By |2020-08-05T14:02:38-04:00Jul 29, 2020|Blog, International|

In 2019, Dr. Tabatadze and her colleagues ─ a small team of doctors ─ established the first local Fragile X laboratory in Georgia. They conducted a pilot study and tested 250 patients with autism spectrum disorder (ASD) and intellectual disabilities; the study yielded 11 positive results for Fragile X.

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