Let the Awareness Continue!
It looks like in many places we're back to wearing masks, or will be soon. Our family has pulled out all our favorite masks and getting used to them all over again.
It looks like in many places we're back to wearing masks, or will be soon. Our family has pulled out all our favorite masks and getting used to them all over again.
Here is your recording of the NFXF webinar: Fragile X Syndrome. Dr. Nicole Tartaglia joins us to discuss Fragile X syndrome (FXS) - everything from brief descriptions of the Fragile X-associated disorders, such as [...]
Jayne offers advice to Fragile X families in transitioning back after post-COVID-lockdowns, from school, to housing, to work, and more.
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.
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.
Parents or caregivers of individuals with Fragile X syndrome who has received services via telehealth during the COVID-19 pandemic may be eligible to participate.
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.
As the option to do telehealth visits opened up over the past six months, we have gathered information to help you make the most of your online visit for your child with Fragile X syndrome, whether they are a young child or an adult.
What can we do to take care of ourselves and to help others? A mother takes a step back to imagine what life during a pandemic looks like through the eyes of her son, who has Fragile X syndrome.
Real-life tips from a mom, Jayne Dixon Weber, who’s already going through this with her own son, plus a a quick video from Rebecca Shaffer to guide you through the process of getting your child comfortable wearing a mask.
Join the NFXF as we celebrate your graduation virtually, with special guest speaker Mr. Gregg Harper. Deadline: June 4, 2020.
Females living with Fragile X syndrome were asked to give advice to other females living with FXS on how to cope with this — or any future — crisis. Listen as Marcia talks through their advice and her own advice, built on decades of working with patients with Fragile X syndrome.
The National Fragile X Foundation has created a social story to reflect the changing requirements that governments are enacting. There’s a lot of information — and misinformation — about COVID-19 out there, but there’s no doubt it’s impacted families in many, many ways.
Drs Rebecca Shaffer and Ernie Pedapati tell you how to prepare for your telehealth visit, including behavioral checkups. They are with Fragile X Clinic at Cincinnati Children's Hospital. Their advice is applicable to all visits.
Barbara Haas-Givler shares her tips and methods for caregivers supporting children with Fragile X syndrome, starting with taking care of yourself first.