The FSHD Navigator

So you don’t have to journey by yourself

by Anna Gilmore, FSHD Society

At the FSHD Society, the families we serve always come first. With that in mind, we are proud to introduce our newest program, the FSHD Navigator.

The FSHD Navigator is a service dedicated to helping families with FSHD find what they need to live their best lives. Through this program, you can get connected to the information, resources, or contacts you’re looking for. This is going to be a very conversational, relationship-focused program. When someone reaches out to the FSHD Navigator, they will be reaching a real, live person – not a bot! – who is dedicated to accompanying them on their FSHD journey.

The Navigator will answer questions, offer advice, source information, or connect you to someone else who has faced the same issue. For those folks who don’t like to pick up the phone, not to worry: We are developing self-serve tools to help you find the answers you need on your own schedule. We are working with intentional flexibility to best suit the needs of the people we serve.

I want to acknowledge and honor that while this program is new, the work is not! This type of one-on-one support has long been done by our staff and volunteer leaders through the chapters, the Gathering Place virtual communities, and in many other ways across the FSHD community. The FSHD Navigator is not replacing these invaluable connections. Rather, we will support, augment, and reinforce their work. As the community grows, we are building a stronger, more interconnected network to support families.

Our vision for the FSHD Navigator is as a central place where the whole community can find the information and advice they’re looking for. Some questions we’ve gotten so far include:

• Should I/my family get a genetic test? What is the process like?
• Can you connect me with someone who’s done the SSDI application?
• I want to be a part of the research. What are my options?
• Is there a doctor in my region who knows about FSHD?
• Who could I talk to about family planning?

This is only a sampling of the types of questions we are hearing these days. Everyone’s situation is different, and everyone has different goals. The FSHD Navigator is focused on helping people find the information that is important to them and making their FSHD journey a little bit easier.

Have you been wondering about something but don’t know who to ask? Do you just want something put into lay terms? Have a question you just know will stump us? Give the FSHD Navigator a try! If we don’t know the answer, we will work to find someone who does.

We have big dreams for the potential of this program. While the formal launch date is at the beginning of 2024, we want you to know that we are here for you at any time. For now, you can get in touch with us by emailing navigator@fshdsociety.org.

Look for more updates in the next few months. We look forward to serving you!