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Progress for SELENON

A private Facebook community of parents and patients united by one shared goal: accelerating progress toward effective treatments for SELENON-RM.

Led by three families of affected children alongside Giving Strength’s Chief Scientific Officer, the group is a trusted hub for collaboration, education, and hope. Members share:

• research updates and scientific insights
• patient stories
• fundraising ideas
• practical resources for families navigating the diagnosis

“Together, we move research forward. Together, we create hope.”

Help drive research from home

Families and individuals living with SELENON-RM can help move research forward, starting with our partner Citizen Health, which gathers your medical records in one secure place and, if you choose, lets your de-identified data power SELENON-RM research.

Want to hear when new studies open? You can ask to be notified.