New call-to-action
New call-to-action
New call-to-action

Keeping Your Loved One With PWS Safe On The Internet

Internet safety is particularly important for our loved ones with PWS. Learn tips and tricks to keep your loved one safe in this recorded webinar.

Let's be frank: our loved ones, like all of us, are spending more and more time online. Some PWS features—such as obsessional thinking, compulsive behavior, and poor impulse control—make keeping an eye on your loved one with PWS while online even more important. In a recent webinar, Elizabeth Roof, Senior Research Associate at Vanderbilt University, and Lisa Matesevac, PATH Study Coordinator and mom to a teem with PWS, discussed the social needs of people with PWS, the upside and downside of social media and zoom groups, healthy online behavior and steps you can take to keep your loved one safe online.

Watch the recorded webinar below! Notes with links to resources are provided below the video.



Online Safety: Where Do I Begin?

  1. Identify potential pitfalls
    • What are the inherent risks?
    • How can I prevent these from happening?
    • Re-evaluate as new needs arise
  2. Limit WIFI access (How to use your router's parental controls – CNET)
    • Establish internet access time limits, time frames when devices will and will not connect to WIFI
    • Pause WIFI when needed
    • Restrict access to certain websites
  3. Block internet browser from accessing websites, or set up limits to adult content
    • Enable “Safe Search” on Google Browser (Settings à Search Settings à Turn on SafeSearch)
    • Website blocking must be done in EACH browser (ex. Chrome, Edge, Safari, Firefox, etc.)

Other Needs to Consider

  • Routinely review internet browsing history
    • What websites is your child visiting?
    • Do you need to re-evaluate what is being accessed?
    • Is your child’s school technology secured?
  • Monitor iMessages and texts
  • Consider parental control software to track internet usage
    • Screen time and web filtering
    • Text and email monitoring
    • Social Media monitoring
    • Ex. Qustodio, Norton LifeLock, Kaspersky Kid Safe, OpenDNS Family Shield, KidLogger, etc.
  • Evaluate website content and browsing history on frequently visited sites
    • YouTube: enable restricted mode setting
    • Consider an alternative like YouTube Kids app which allows for parental controls

Managing Facetime and Zoom Groups

Establish relationships with other parents in the online social circle

    • Encourage open communication
    • Exchange contact information with other parents/guardians

Monitor communications during zoom or chat

    • Consider having a parent/guardian moderator
    • Choose a safe place in the home where the conversations can be monitored

Set up features to prevent strangers from entering conversations

    • iPads and iPhones allow limiting FaceTime to only those in contact list
    • FaceTime can be disabled on Mac computers using Parental Controls in system preferences
    • Zoom has many features that give you control of who can enter a meeting (How to Keep Uninvited Guests Out of Your Zoom Event, Zoom Blog)
    • Waiting room, lock the meeting, passwords

iPhone and iPad Parental Controls

    • Parental controls in iPad and iPhone (Use parental controls on your child's iPhone, iPad, and iPod touch, Apple Support)
    • Settings -> Screen Time
    • Set content and privacy restrictions
    • Prevent iTunes and App Store Purchases, set up Ask to Buy
    • Prevent explicit content and content ratings
    • Prevent web content
    • Restrict Siri websearch
    • Restrict Game Center
    • Block ability to make in app purchases
    • Limit contact to only those in contact list (parent is in control of the contact list)
    • Designate set time limits for apps
    • Schedule downtime from the screen
    • Set restrictions for iTunes ratings (movies, TV shows, apps)
    • Restrict Locations Services and Share my Location
    • Prevent passcode changes

Android Phones and Tablets

    • Parental controls may vary between devices (How to Lock Down Your Android Tablet or Smartphone for Kids,
    • Limit content rating for games, music, movies, etc.
    • Set up web filtering
    • Restrict and/or monitor data usage
    • Restrict Google Play downloads and purchases
    • Restricted Profiles only available on tablets, not smartphones
    • *Note the Restricted Profile feature does not provide a way to restrict adult content accessed through Google Chrome or other web browsers
    • To limit adult content, download a parental control or web filtering app from the Play Store, or set up parental controls on router if only using home WIFI
    • Manage Parental Controls on tablet in PlayStore App
    • Menu Settings -> Parental Controls à Create a PIN -> Tap type of content you want to filter -> choose how to filter or restrict
    • Manage Parental Controls on Android phone
    • Settings -> Digital Wellbeing and Parental Controls -> Get Started -> Select child, teen or parent -> Get Family Link -> Install
    • Can set up a passcode

New Call-to-action

Topics: Research

Susan Hedstrom


Susan Hedstrom is the Executive Director for the Foundation for Prader-Willi Research. Passionate about finding treatments for PWS, Susan joined FPWR in 2009 shortly after her son, Jayden, was diagnosed with Prader-Willi Syndrome. Rather than accepting PWS as it has been defined, Susan has chosen to work with a team of pro-active and tireless individuals to accelerate PWS research in order to change the future of PWS. Inspired by her first FPWR conference and the team of researchers that were working to find answers for the syndrome, she joined the FPWR team in 2010 and led the development of the One SMALL Step walk program. Under Susan’s leadership, over $15 million has been raised for PWS related research.