2024 Sibling and Self-Advocate Network Survey

We want to hear from you!

What things do you care about the most? What would help you feel connected as a self-advocate or sibling of someone with Fragile X? Share your thoughts below.

Your answers are anonymous. That means we do not know who shared what. There are no wrong answers.

We will use this information to make a two-year plan for sibling and self-advocate activities.

Thank you!

1.What Sibling and Self-Advocate Network (SSAN) events have you participated in? Please check all that apply.

Monthly Zoom calls

Advocacy Day training

NFXF Conference sessions

SSAN social media

Guest speakers: Drs. Schmitt & Shaffer's presentation on emotion regulation, Laine Kanat's painting activity, Jed Seifert's presentation on employment

No, I have not participated in any SSAN events

2.What kinds of activities are you interested in? Please check all that apply.

Virtual activities crafts, classes, get-to-know-you chats

Learning a dance

Guest speakers: like Drs. Schmitt & Shaffer's presentation on emotion regulation, Laine Kanat's painting activity, Jed Seifert's presentation on employment

In-person activities: meet ups at NFXF events, local events

Self-Advocate only activities

Sibling only activities

3.What topics are you interested in? Please check all that apply.

Job skills

Relationships: friendships and romantic relationships

Understanding anxiety

Understanding Fragile X

Understanding how to support your sibling with FXS

Meeting other siblings

Other (please specify)

4.What else do you want to share?

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