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.
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.
MORE COVID-19 RESOURCES
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.
COVID-19 Check-In: Month 15 — Ready for Re-Entry?
Jayne offers advice to Fragile X families in transitioning back after post-COVID-lockdowns, from school, to housing, to work, and more.
COVID-19 Vaccines and Fragile X and Dr. Erickson Answers Your Medication Questions
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.
Is the COVID-19 Vaccine Safe for Individuals with 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.