May 6, 2022

Updates from the Frontlines of Medical Research

Updates from the Frontlines of Medical Research

In recognition of ALS Awareness Month, we get a report from the frontlines of ALS research, including new breakthroughs that impact patients. Dr. Sharon Hesterlee, the Chief Research Officer at the Muscular Dystrophy Association, gives us the big picture on ALS research and other neuromuscular diseases. 

Plus, Terry and Dr. Bob discuss new health legislation, including a bill that would ban the QALY, a discriminatory health care metric that hurts patients with rare or chronic diseases. And Kate speaks with Jenny Jones, an advocate for Familial Adenomatous Polyposis (FAP), about her advocacy work for this rare genetic condition. 

Hosts: 

Terry Wilcox, Executive Director, Patients Rising

Dr. Robert Goldberg, “Dr. Bob,” Co-Founder and Vice President of the Center for Medicine in the Public Interest

Kate Pecora, Field Correspondent

Guests: 

Sharon Hesterlee, Chief Research Officer at the Muscular Dystrophy Association

Jenny Jones, Patient Advocate and Author of Life's A Polyp

Sara Healy, Patient Correspondent

Jana Healy, Patient Correspondent

Links: 

Terry Wilcox Applauds QALY Ban Bill - Patients Rising Now

Amyotrophic Lateral Sclerosis (ALS) - Diseases | Muscular Dystrophy Association

Rodgers, Banks, & Wenstrup Lead QALY Ban to Affirm Every Person's Life has Value - Energy and Commerce Committee

QALY Bill | H.R.7634 - Protecting Health Care for All Patients Act of 2022

ICER to Assess Treatments for Amyotrophic Lateral Sclerosis

MOVR Data Hub (neuroMuscular ObserVational Research) | Muscular Dystrophy Association

Life's A Polyp - Youtube Channel 

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The views and opinions expressed herein are those of the guest(s)/ author(s) and do not reflect the official policy or position of Patients Rising.