Two important videos from Dr. Craig Erickson who discusses COVID-19 vaccines for individuals living with Fragile X premutations and full mutations, plus a second video on medications and Fragile X.
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.
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).
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.
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.
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.
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.
The 5th Annual Bike to X Out Fragile X is in the books and another success in raising support and awareness of Fragile X in Iowa. Nancy Carlson, the NFXF Heartland Chapter leader and Fragile X mom tells us all about it.
The Marners held a golf outing in western Illinois to raise support for the NFXF. “We love being able to help in any way we can and this is something Reid also had so much fun with!”
Sophia James, a top 10 finalist in the latest season of American Idol, talks about being a sibling to her brother James, who has Fragile X syndrome. There is so much in what she says — take the time to watch and read it. It’s well worth your time.
"These top-line data show promise for Zygel in some individuals with Fragile X syndrome. We look forward to seeing the next steps taken by Zynerba, and continue to be thankful for their thoughtful partnership and dedication to bettering the lives of those living Fragile X.” —Linda Sorensen, NFXF Executive Director