March 26, 2020: The following is a message to the Fragile X community from NFXF Executive Director Linda Sorensen.
I 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 now, we’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:
- My Child is Home… Now What?? video Series by Dr. Rebecca Shaffer. This first video is on Keeping a Routine.
- COVID-19 – My child is home from school or work or a day program! What do I do? an article by Jayne Dixon Weber
- Former congressman, Fragile X dad, and NFXF team member Gregg Harper, has contacted key members of Congress urging them to consider the needs of students with intellectual and developmental disabilities while schools are closed in any new funding legislation. This includes increased availability for home-based services and expanding the success of telehealth services during this crisis.
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Coffee Chats for CSN Chapter Leaders with Missy Zolecki.
- The Siblings and Self-Advocates Network is having a weekly Funday Friday virtual meet up.
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
Survey: Share Your Experience With Telehealth and Services During COVID
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.
Telehealth Visits: Suggestions for Parents on How to Prepare
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.
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.