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
Female Power to Fight a Crisis — Presentation
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.
Supporting Your Child with Fragile X Syndrome During Special Times — Presentation
Barbara Haas-Givler shares her tips and methods for caregivers supporting children with Fragile X syndrome, starting with taking care of yourself first.