Family and Connection
Connecting with other families who understand childhood-onset Hereditary Spastic Paraplegia (HSP) can provide invaluable support and practical insight on your journey. Explore these ways to build community, share experiences, and stay connected:
- Connect through the survey: The Childhood-Onset HSP survey helps bring families’ experiences together. If you’re open to being contacted or connected with another family, answer the relevant connection question and opt in as indicated. Any introduction depends on consent and a suitable match; it isn’t guaranteed.
- Find a Facebook community or support group: Groups can connect families across countries, regions, and HSP communities. Explore the SPF Support-Groups page and the HSP Support Group directory, which list options including the SPF Facebook Group and Hereditary Spastic Paraplegia’s Unite. You can also search Facebook for your child’s HSP subtype or region.
How to Find Specific Subtype Groups on Facebook
- Open the Facebook search bar.
- Enter "HSP" or "Hereditary Spastic Paraplegia" along with your target subtype (e.g., "HSP SPG4" or "Childhood HSP").
- Filter search results by Groups to view public and private support communities.
- Meet through the Spastic Paraplegia Foundation (SPF): The Annual Conference brings together people with HSP and PLS, families, and caregivers; check the current program for family or children’s sessions.
- SP-Foundation has an Ambassador program helps build local connections, while this is not specific to child onset HSP, some of its ambassadors do have lived experience and or / can support in connecting families with shared lived experiences.
- Boston Children’s Hospital Natural History Study — The study supports research into early-onset HSP. Before presenting it as a way to meet other families, confirm with the study team whether they facilitate family connections. Participation in research alone should not be described as a peer-connection opportunity.
