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Silent Strength

Heard. Seen. Empowered.

Through our Silent Strength, Living with Invisible Illness

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 illness, educate communities with accurate information, and provide support for individuals and families navigating chronic and complex conditions—especially youth.

Awareness

Amplifying voices and promoting visibility for those living with chronic, unseen medical conditions through policy work.

Education

Providing resources and information to foster understanding and reduce the stigma of hidden illnesses.

Support

Highlighting disease awareness months and initiatives to promote  informed support for those affected by invisible illness.

Lucy Alphin

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 Lindy McDonnell and Ford DeWitt, both high school students, 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:

 2,900+ People Reached

Through social media awareness and advocacy initiatives

 100+ Community Members

A growing audience across Instagram and Facebook

 100+ Educational Posts

Focused on raising awareness and reducing stigma around invisible illness

Community Partnership

Proud partner of Gameday Valet, helping support future growth and funding

Be part of the impact.

Help us continue raising awareness and supporting individuals living with invisible illness.

Our Community Partnership

Gameday Valet Logo

Help Support Silent Strength. A portion of Gameday Valet's proceeds benefit Silent Strength.

 

 

 

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.

 

Coming 2026: Updated EDS Diagnostic Criteria

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