Our Mission

Turning Lived Experience Into Action

We raise awareness, empower families, and help reduce barriers faced by those navigating rare pediatric neuromuscular disease.

Our Mission

At Hope for Samy Foundation, our mission is to advance hope, equity, and support for families navigating rare pediatric neuromuscular diseases.

Inspired by lived experience, we work to reduce barriers to care, strengthen caregiver empowerment, raise awareness, and foster collaboration among families, advocates, clinicians, and communities to improve outcomes for underserved children and their caregivers.

We believe no child’s future should depend on how well their family can navigate a fragmented healthcare system.

Giving Families a Voice

We amplify the stories of families facing rare diseases and help bring visibility to conditions too often overlooked.

What We’ve Achieved

  • Brought Samy’s story to a national audience on Radio-Canada, helping raise awareness of LGMD2C/R5 and the realities faced by families living with rare diseases.

  • Built a growing community of supporters, advocates, and families united around one mission: accelerating hope for children affected by ultra-rare muscular diseases.

  • Established connections with rare disease organizations, researchers, and stakeholders to help create pathways for collaboration and future opportunities.

  • Created a public platform to raise awareness and educate communities about rare pediatric neuromuscular disease and caregiver challenges.

  • Mobilized awareness and community advocacy efforts to amplify rare disease family voices and support public engagement.

  • Transformed lived experience into a growing community advocacy initiative focused on hope, visibility, and equitable support.