Patients and Families

“Asking for what you need is one of the bravest things that you’ll ever do.” - Brené Brown

The Family Services staff at the IFOPA connects families to resources and support within the FOP community and beyond. We love working with families to learn about their specific needs and the barriers to meeting those needs. As a way to serve you better, we are excited to launch The Advocacy Series.

Our hope for The Advocacy Series is to:

• Deepen the communication between the IFOPA and community members and learn more about the factors keeping you or your loved one with FOP from getting their needs met
• Educate individuals with FOP and their support network on ways to be an effective advocate
• Create opportunities for community members to connect and learn from one another
• Combine IFOPA resources and community knowledge to create a workbook for people to use as they navigate their own advocacy opportunities

In 2021, The Advocacy Series will focus on the following quarterly topics:

1. Advocacy: You Can Make A Difference
   We’ll discuss how to build upon your strengths to communicate your needs and create an action plan for more effective problem-solving.

   Complete the questionnaire to receive your FREE Advocacy Series Workbook for Quarter 1.

   **It is not required that you participated in the Quarter 1 Advocacy Series programming to request a notebook.

2. Advocacy At All Ages
   Advocacy begins by empowering children to overcome challenges rather than enabling them to rely on others. Learn how children, teens and young adults can start advocating for their needs at different developmental stages.
   
   
3. Advocating in a Medical Setting
   Take control of your medical journey by learning the tools you need to be an effective member of your health care team.
   
   
4. Advocating for Mobility and Independence
   Learn how to access the tools, equipment and transportation you need to get outside and engage with those around you.

Community members can participate in The Advocacy Series in the following formats:

• Introductory Podcast: Hope Newport and Karen Kirchhoff, Family Services staff will introduce the quarterly topic and provide highlights of the content to come.
• Community Panel: Meet with other members of the FOP community over video conferencing to hear the experience of others and complete activities together as a group.
• Resource Webinar: Hear a subject matter expert address the topic and have the opportunity to ask questions.

The Community Panel and Resource Webinar will be hosted on Zoom video conferencing and simultaneous translation** will be provided in the following languages: Arabic, Bengali, Chinese (Simplified), Chinese (Traditional), Dutch, English, French, German, Hindi, Italian, Japanese, Korean, Polish, Portuguese, Russian, Spanish, Tamil and Vietnamese.

• Learn how to navigate Zoom
• Preview the instructions for turning on translation in a Zoom meeting
• You do not need a ZOOM account to join a meeting or webinar, but if you can download the ZOOM app to your computer, phone or tablet it might make it easier. You can also join by phone: IOS (iPhones, iPads) / Android devices

**Translation services and the Zoom video application can not be accessed at the same time on a single mobile device. If you're using a mobile device and want to access translation and see fellow attendees during a Zoom meeting, you will need a second mobile device or a computer to open translation services. With two mobile devices or a mobile device and a computer, you can participate in the Zoom meeting on one device and access written and audio translation on the other.

2021 Programming Schedule: 

Sign up for email updates and additional information about future Advocacy Series programming

QUESTIONS?

For more information about the program or to share your experience as an advocate, please contact Hope Newport, IFOPA Family Services Manager, or Karen Kirchhoff, Family Services Coordinator.