“Hero mom” takes FDA fight to Washington

The mother of two Saxtons River boys suffering from a rare terminal illness who launched an online campaign last year to gain access to a life-saving drug is taking her fight to Congress.

Jennifer McNary is in Washington, D.C., today to present a petition with more than 170,000 signatures to the Food and Drug Administration, urging it to expedite the approval of the drug eteplirsen, which has been called “a miracle drug” by families affected by Duchenne Muscular Dystrophy, a degenerative genetic mutation that causes the loss of dystrophin, a large-structure protein which protects muscle fibers.

Read the full story from Lucia Suarez on the Rutland Herald web site >>

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