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Mother's Journey: Early SMA Diagnosis Sparks Hope for Charlie

1/14/2026

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Center

Mother Shares SMA Journey

A mother recounts her son Charlie's Spinal Muscular Atrophy (SMA) diagnosis after she initially feared an infection.
Diagnostic tests confirmed SMA, fueling fear and uncertainty about Charlie's future.
Charlie began an oral medication and later received gene therapy, which helps preserve motor neurons and keeps him hopeful.
Early detection is routine in the United States.
In the United Kingdom, it is not yet routine.

Left

Aleksovska Critiques Budget Cuts

North Macedonia's rare diseases program faces its first budget cut since inception, with the 2026 budget dropping from 24 million euros to 17.5 million euros.
The reduction will affect therapy for 430 patients.
Vesna Aleksovska, president of the Civic Association of Citizens with Rare Diseases, criticized the decision as a practical and ethical failure.
She noted that new patients are diagnosed annually, and cuts could delay access to necessary treatments.

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Mother Shares SMA Journey

A mother recounts her son Charlie's Spinal Muscular Atrophy (SMA) diagnosis after she initially feared an infection.
Diagnostic tests confirmed SMA, fueling fear and uncertainty about Charlie's future.
Charlie began an oral medication and later received gene therapy, which helps preserve motor neurons and keeps him hopeful.
Early detection is routine in the United States.
In the United Kingdom, it is not yet routine.

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