He was diagnosed with ALS. Then they changed the face of medical advocacy

Brian Wallach, who has ALS, and his wife, Sandra Abrevaya, have significantly impacted medical advocacy through their organization I Am ALS and by pushing for the enactment of a law known as ACT for ALS.

The ALS journey: Wallach, a former assistant U.S. attorney, was diagnosed with ALS six years ago, a neurodegenerative disease with no cure.
* ALS gradually robs a person’s body of its motor skills and has a mortality rate of two to five years from diagnosis.
* Wallach and Abrevaya’s mission is to transform ALS into a chronic disease rather than a fatal one.

Building an advocacy network: In 2019, the couple launched I Am ALS, a network advocating for research and government funding.
* Wallach has testified three times before Congress and the organization successfully pushed for the enactment of ACT for ALS, which enhances federal research and gives patients quicker access to treatments still under FDA review.

Living with ALS: Wallach know their background provides them the access, network and influence many ALS patients lack.
* Wallach and Abrevaya look after their two young girls while Abrevaya also takes on the role of a full-time caregiver which costs around $300,000 per year.
* Abrevaya emphasizes the necessity of affordable care for patients and their families, arguing without it, caregiving can feel like imprisonment.

Despite the challenges, Wallach and Abrevaya are committed to their work and their aspiration of making ALS a chronic disease. Their goal, simple and human – to live, continues to drive their fight.

View original article on NPR

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