Database of Adaptive Tools, Equipment, Home Modifications and Tips Will Be a Resource for Independent Living  

The IFOPA has been hard at work with web designers creating a platform for the new Ability Toolbox Online Guidebook. This online resource provides a database of adaptive tools, equipment, home modifications and tips for the FOP community to access as a resource for independent living. Individuals with FOP and their family members and caregivers will be able to use this resource to discover and share useful tools and share tips and experiences that help make living with FOP more manageable.

The Online Guidebook has been designed to be user friendly:

·        Accessible both on a desktop and mobile phone
·        Translated into any language with the click of a button
·        Searchable by keyword or mobility restriction
·        “Favorites” feature for later reference (available to individuals with FOP who have logged in)
·        Shareable on social media

Both commercially purchased tools and homemade tools that members of the FOP community have crafted will be featured with descriptions, pictures, tips for use, videos (if available) and links to vendor sites for purchasing.

The Online Guidebook is organized by activity and has search capabilities by keyword or mobility restriction. Users will be able to leave reviews and comments. Individuals with FOP will also have a login feature giving them the ability to save “Favorite” items for later reference.

The Ability Toolbox Online Guidebook is an incredible resource for new families just beginning to learn about tools or someone looking for ways to adjust as mobility changes. The Guidebook saves users both time and effort by putting tools useful for FOP adaptations in one place. It also helps save money as individuals and families share what works best for them, how they made a homemade version of a tool or how to use an existing tool in a different way. 

The Online Guidebook will go live November 13 with a few tools in each category, but the hope is that more tools will be continuously added as time goes on and as more people participate by offering remarks, pictures, videos and new tool ideas.

When the Online Guidebook launches we will provide instructions on how to use your current Patient Directory login to access this new resource. Don’t have a Patient Directory login? You can learn more about the Patient Directory and set one up here.  

Would you like to submit a picture and/or video demonstration of a tool(s) you use for inclusion in the Ability Toolbox Online Guidebook? Email them to Karen Kirchhoff, IFOPA Family Services Coordinator, at [email protected].

THANK YOU TO OUR SPONSORS

The IFOPA is able to offer Ability Toolbox: Everyday Tools for Independent Living thanks to generous support from the Radiant Hope Foundation, as well as Regeneron Pharmaceuticals, Ipsen and Blueprint Medicines.