Silent Strength: Changing the Way the World Sees Invisible Illness.
Heard. Seen. Empowered.
Awareness. Education. Support for invisible illness.
Silent Strength is a youth-led nonprofit dedicated to amplifying the voices of those living with invisible illness. Through awareness, education, and community support, we work to foster understanding, reduce stigma, and create compassionate spaces for individuals and families navigating chronic and often unseen medical conditions.
Our Mission
To raise awareness of invisible illnesses, expand access to education, and support individuals and families while fostering empathy, understanding, and inclusion.
Our Vision
Silent Strength envisions a world where invisible illnesses are recognized, understood, and met with compassion, respect, and support.
Silent Strength was founded by Lucy Alphin, a youth advocate who began this organization at just 15 years old.
Lucy lives with Hypermobile Ehlers‑Danlos Syndrome (hEDS), Postural Orthostatic Tachycardia Syndrome (POTS), and Craniocervical Instability (CCI). Her lived experience navigating complex, invisible medical conditions at a young age shapes every aspect of Silent Strength’s mission and values.
As a youth‑led initiative, Silent Strength is guided by young people who live with invisible illness. Board members bring their own lived experiences into the work—helping ensure that youth voices remain central to awareness, education, and advocacy efforts.
Together, Silent Strength emphasizes the importance of listening to young voices, recognizing the unique challenges faced by children and adolescents with chronic illness, and building informed, compassionate communities that support individuals across all ages.
Invisible doesn’t mean insignificant. Every person matters.
Our Impact So Far
Even in our early stages, Silent Strength is building meaningful momentum:
15,000+ Social Media Views
Through social media awareness and advocacy initiatives
100+ Community Members
A growing audience across Instagram and Facebook
Focused on raising awareness and reducing stigma around invisible illness
700+ Meta Content Placements
2 Community Partnerships
Proud partner with Gameday Valet and Strom Law Firm, helping support future growth and funding
Help us continue raising awareness and supporting individuals living with invisible illness.
Be part of the impact.
For the first time since 2017, the diagnostic criteria for all types of Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD) will be updated.
The new framework will be published on December 1, 2026, in the internationally renowned journal, the American Journal of Medical Genetics, a leading global publication for genetic and rare disease research. Once published, the new framework will replace any previously published diagnostic criteria for EDS and HSD.