Patients and Families
The IFOPA is excited to add the Ability Toolbox Program to the list of Family Service programs in 2019. The focus of this program is to empower individuals with FOP by promoting independence through the use of tools and home adaptations.
Ways the Ability Toolbox Program Can Support You
INCREASING opportunities for independence and promoting higher levels of confidence.
ASSISTING community members with developing sustainable daily habits that promote decreased reliance on caregivers, and balance in the lives of families affected by FOP.
EMPOWERING people to solve problems by creating tools designed to meet their own unique needs.
Watch These Video Resources from the Ability Toolbox Program
The Ability Toolbox Presentations from the 2019 and 2020 Family Gatherings are online. Hear the FOP community member panelists discuss tools they use every day to maintain their independence during daily routines. See examples of a few tools from these different categories: Eating and Cooking, Toileting, Bathing/Showering, Dressing and Grooming, School and Workplace, Recreation and Hobbies, Medical and Preventative Tools, and Adaptations Around the Home.
Learn about the importance of oral health and its impact on overall well-being in this FOP-specific dental webinar from the Ability Toolbox program. Hear recommendations from FOP dental expert Dr. Clive Friedman for preventative dental care during infancy, childhood, adolescence, and adult stages of living with FOP, including complications such as ankylosis of the jaw. Learn how FOP impacts your risk for oral disease, and view various tools and products that can assist you in decreasing those risks. Watch the recorded webinar.
**The webinar was recorded live in English but can be viewed with translated subtitles.
Get Involved in the Ability Toolbox Program
Watch for our weekly posts on social media to see featured tools and tips for staying independent during daily routines.
- Watch videos of community members demonstrating various tools on our YouTube channel.
- Learn from our larger FOP community as they share their feedback and recommendations at small in-person meetings and larger Family Gathering presentations in the US and around the world.
- Speak with the Family Services Coordinator, or one of our Tool Ambassadors, to have your questions about tool integration and home adaptations answered. Call +1 (913) 558-1879 or email Karen Kirchhoff, Family Services Coordinator, to learn more about the Ability Toolbox program.
See What the Ability Toolbox Program Accomplished in Its First Year
The Ability Toolbox Program was launched in 2019 with generous funding from The Radiant Hope Foundation, Regeneron Pharmaceuticals, Ipsen and Blueprint Medicines. The program made major strides in its first year. Read all about it.
Explore the New Ability Toolbox Online Guidebook!
The IFOPA is pleased to launch a brand new resource for the FOP community – the Ability Toolbox Online Guidebook – 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, activity or mobility restriction (must search keywords in English, then can translate the text to read about the resource)
- “Favorites” feature for later reference (available to individuals 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. While the Online Guidebook searches by activity or mobility can be translated into any language, keyword searches must first be completed in English. Online Guidebook users will be able to leave reviews and comments. The Guidebook includes a login feature giving users the ability to save “Favorite” items to go back and view later.
Access the Ability Toolbox Online Guidebook. You don't have to log in to view the database of resources. This allows you, your family, health care professionals, social workers, teachers, etc. to view and use the Online Guidebook. To use the "Favorites" functionality to save tools to view later, you will need to log in to the Online Guidebook.
- If you have already set up a profile in the Patient Directory, click the login link.
- Set up an account so you can access the Patient Directory and the Guidebook with the same login. You will receive an email with your username and login within 24 hours Monday-Friday.
- If you are only interested in a login for the Ability Toolbox Online Guidebook, click My Account to set up an account.
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.
The Ability Toolbox program is made possible by grants from The Radiant Hope Foundation, Ipsen, Regeneron Pharmaceuticals and Blueprint Medicines.
SPONSORSHIP & ACKNOWLEDGEMENTS
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.