Parenting

Muscular Dystrophy Patient and Family Find Hope with 'Right to Try Act'

Laura McLinn

Photo: Laura and Jeff McLinn with their son, Jordan, who has Duchenne muscular dystrophy. Photo by Andi TenBarge, TheStatehouseFile.com. Source: http://thestatehousefile.com/story-video-5-year-old-seeks-legislators-help-getting-treatment-for-fatal-illness/20526/

This happened to Laura McLinn as her son, Jordan, lives with Duchenne dystrophy syndrome. However, it was good news for the Indianapolis woman as the Right to Try Act was passed by the U.S Senate. The Act allows terminally ill people to access these drugs for treatment when all the approved treatment options have been exhausted. This bipartisan measure is sponsored by Ron Johnson, D-Indiana, Sens. Joe Donnelly and R-Wisconsin.

Donnelly has worked with McLinn family since last year to advance the legislation. McLinn family became big advocates for this legislation when they realized that many people like their family wanted to try experimental drugs. Some of the terminally ill people don’t have a lot of time to wait for experimental drugs to be approved.

So far, Jordan has undergone clinical trial and his family hope that the drug will slow progression of the disease. The family will continue to advocate for the legislation for people who are not lucky. McLinn believes that Jordan and other patients of Duchenne dystrophy syndrome can benefit when the legislation becomes law.