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

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.

A COVID-19 Social Story from NFXF

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.

How to Prepare for a Telehealth Visit

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.