Database of Adaptive Tools, Equipment, Home Modifications and Tips Is a Valuable Resource for Independent Living  

The new Ability Toolbox Online Guidebook went live in December 2020 with 12 different tool categories containing tools, tips and home modifications that can be used to make living with FOP more manageable.

The 12 categories include:

Tool pages within each of the 12 categories include pictures, video demonstrations (if available), the purpose of the tool and detailed descriptions of the tool features, special tips or safety considerations when using the tool, and where the tool can be purchased. If the tool can be homemade, supply lists and instructions are also displayed.

New Ability Toolbox Online Guidebook Offers Many User-Friendly Features and Search Capabilities

The Online Guidebook is user-friendly and easy to navigate both on a desktop or a mobile phone, but familiarizing yourself with a few of the features can enhance your experience.

In the upper right corner of each Guidebook page is the Google translation button. It will translate page contents into the language of your choice.

Directly under the name of the tool you will find “Tags.” These tags list different areas of mobility that might benefit from using this particular tool. For example, the pictured “Freedom Wand” can provide assistance when there is limited arm, hip or trunk mobility. To search for tools based on a mobility tag, simply return to one of the 12 category pages and select the desired tag from the menu on the left to filter your search. Tags to choose from include different areas of limited mobility (neck, trunk, hip, arm, wrist, leg, ankle), limited strength/endurance, limited balance, safety/prevention and a pediatric tag.

Directly under the picture of the tool you will find a rating scale. This provides the FOP community with a way to rate tools they have had experience with and helps others know if a tool is useful with FOP. At the very bottom of each page there is also a button to submit reviews of tools for more in-depth recommendations, specific discoveries community members may have about the tool, or explanations as to why a tool did or did not meet expectations. These reviews are submitted to the Family Services Coordinator and then uploaded to the Guidebook on an individual basis.

To “favorite” a collection of tools that you are interested in, log in to the Online Guidebook using your username and password that you created for your Patient Directory profile. Once you are logged in you will have the ability to add a tool to your favorites by clicking the “Favorite” button at the bottom of the menu bar on the right side of the page. Your favorite tools will be saved under your account and can be viewed by clicking the “My Account” button at the top. If you do not have an account and would like one, you can either create an account through the Online Guidebook site (click “My Account”) or through the Patient Directory site. No matter which site you use to create your account, the username and password will be the same for both.

Contribute Your Suggestions for the New Ability Toolbox Online Guidebook

Do you have a tip, tool or home modification that you use to help make living with FOP more manageable that isn’t already in the Guidebook? Submit your tool suggestions to the Family Services Coordinator at [email protected]. You are also encouraged to submit pictures and videos of the tools you use, including both commercially purchased tools you may have adapted or homemade tools you crafted yourself. Sharing your knowledge with others is what makes this resource more valuable and the community stronger and more successful!

Special Thanks!

Again, a special thank you to the sponsors that have helped make this Online Guidebook possible: The Radiant Hope Foundation, Ipsen, Regeneron Pharmaceuticals and Blueprint Medicines. Your generous donations have supported the Ability Toolbox program and helped create this wonderful new Guidebook that will help educate and support families with FOP!