When their sons are diagnosed with a fatal disease, four mothers evolve from caregivers to determined political activists as they fight the FDA for access to a potentially lifesaving drug. 

Victims of Duchennes Muscular Distrophy are usually diagnosed around age 5, and aren’t expected to live beyond their 20s. To the Edge of the Sky provides intimate access to the lives of four women and their families, with all the strain on personal relationships and the effort to meet the demands of treatment and achieving accessibility for their increasingly ill children. Unsatisfied with the answers they receive from the FDA regarding testing of a new drug, the women — as leaders of a nationwide group of Duchenne parents — learn how to navigate governmental agencies and corporate boardrooms to reach their desperate goal. A moving battle depicting citizens’ roles in shaping the policies that affect all our lives, the struggles of parents with terminally ill children, and the mainly unseen world of pharmaceutical development.

UPDATE (August, 2017): Due largely to the political efforts of the four women featured in To the Edge of the Sky, the “Right to Try” bill just passed in the U.S. Senate. The Right to Try Bill allows terminally ill patients access to medicines after only Phase One FDA testing, before full approval. The law has already been signed in 37 states.

Public Health and Healthcare Policy, Allied Health, Medicine (Pediatric and Family), Healthcare Administration, Disability Studies, Social Welfare, Counseling, Education, Public Policy, Biochemistry, Politics, Community Activism, Women’s Studies

Awards: Audience Award, Stony Brook Film Festival

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 Additional Film Info:

Distributor: Juno Films
Directors: Jedd & Todd Wider
DP: Gerardo Puglia
Run time: 120 minutes
Genre: Documentary
Type: Color
Year: 2017
Language: English
Closed Captioned