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The Need for Advocacy

Without treatment paid for by the National Institutes of Health, Lori’s son Nino might be unable to walk. Other than a small chest port under his shirt that allows doctors to administer his drugs, the nine-year-old’s body gives little indication of the rare and debilitating periodic fever syndrome (PFS) he suffers from. For now, Nino will continue receiving the off label drug that allows him to attend school every day and play sports. But the National Institutes of Health is suffering severe federal budget cuts and the Todaros’ health insurance has denied coverage for the treatment. The prospect of a backwards step in her son’s treatment is one that Lori Todaro isn’t willing to accept. Lori has joined Uplifting Athletes as the Director of Advocacy to identify and pursue opportunities to influence policy change to improve the situation for rare disease patients.

Our top advocacy priority is Nino's Act (Senate Bill #2629 and House Companion Bill HR #5468), which has the potential to help thousands of children and families affected by a rare disease. The Legislation ensures that successful treatments for rare diseases received through studies at NIH are covered under Medicaid if the child’s insurance carrier does not recognize the off label treatment.” Currently Nino's Act sits in the Senate Finance Committee and in the House Committee on Energy and Commerce.

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