March 26, 2020: The following is a message to the Fragile X community from NFXF Executive Director Linda Sorensen.

Now more than ever, together, we're stronger logoI hope you are well, taking care of yourselves, and finding a way to connect with people you love.

To anyone directly on the front lines of this global health crisis — Thank You. We are so grateful for all that you are doing to help us. And we feel the same gratitude to any of your family members and friends also on the front line for their sacrifice.

The NFXF is here to help during this extraordinary time.

With most of us staying at home nowwe’re committed to providing you with the most timely and meaningful educational resources we have available. This includes sharing a series of articles, video series, and webinars such as: 

We will be making more resources available to you as fast as we can to try to make every day a little bit better. Look for five more videos in the series with Dr. Shaffer, the #XStrong coloring and awareness activity for children, social stories for COVID-19, articles, and more. 

Regarding the 17th International Fragile X Conference, we are closely monitoring the recommendations of the World Health Organization, Centers for Disease Control and Prevention, and other applicable government agencies. The NFXF continues to move forward with the Conference and will make every effort to hold it as planned. If it becomes apparent that doing so may jeopardize public health we may have to consider other options. For the most up to date information visit our conference page.   

Please know if it becomes apparent that doing so may jeopardize public health, we are considering other options with the primary goal of providing access to the valuable educational content the conference provides. We will update you as soon as we know more.  

I know these uncertain times are very challenging.  

I also know that now more than ever, Together, We’re Stronger.  

Be well,

Linda

MORE COVID-19 RESOURCES

COVID-19 Check-In: Month 5

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.

Getting Comfortable Wearing a Mask

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.

Female Power to Fight COVID-19 with Marcia Braden

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.

Load More Posts