BOULDER, Colo. — Edgewise Therapeutics, Inc., a leading muscle disease biopharmaceutical company, today announced the launch of an educational website dedicated to the Becker muscular dystrophy (Becker) community: www.beckermusculardystrophy.com. This is the first website solely focused on providing Becker-specific resources to help individuals and caregivers better understand the disease, learn different approaches to care and stay up to date on advocacy partnerships and available services.
Becker is a genetic disorder, mostly impacting males, with an estimated 5,000 individuals living with the disease in the United States. Individuals with Becker experience progressive muscle degeneration and weakness due to contraction-induced muscle damage, leading to the eventual loss of muscle function. Symptom onset can occur at any age; once muscle loss begins, it is irreversible. Some individuals living with Becker also experience heart failure from cardiomyopathy, which may result in heart transplantation or early death. There are currently no approved treatments for Becker and limited supports and services are available for the Becker community to help navigate living with the disease. The new Becker website was launched to help fill this gap by offering a comprehensive resource. It features educational content about the disorder, such as diagnosis of Becker, symptoms, disease progression, building a multi-disciplinary care team that considers the multi-systemic nature of the disease, clinical trials and other resources. In developing the website, Edgewise incorporated input from the Becker community and patient advocacy organizations.
“The Becker journey can feel like you have no one to turn to, so it’s important to have information that is Becker specific to help navigate the way,” said Nevin Steiner, a patient advocate living with Becker. “I’m proud to be part of this outreach initiative. I hope that sharing my voice and addressing the challenges we with Becker face will help those that haven’t progressed yet with Becker better prepare for the future.”
“Ensuring that individuals with Becker and their loved ones feel seen and heard while navigating a rare disease is so important,” said Pat Furlong, Founder and CEO, Parent Project Muscular Dystrophy. “Educational resources like Edgewise’s Becker website are critical for these individuals when it comes to making informed decisions around their care.”
“At Edgewise, we are committed to developing lifesaving therapies for severe, rare muscle disorders,” said Joanne Donovan, M.D., Ph.D., Chief Medical Officer of Edgewise. “Recognizing the unmet need in Becker, a condition that for far too long has been underserved, we are proud to provide a platform for the community to foster support and education.”
Currently there is no cure for Becker; early and long-term multidisciplinary care from neuromuscular specialists, cardiologists, physical therapists, and other specialists is critical for optimized disease management. Novel therapies are in development for Becker, including muscle targeted interventions, aimed at positively impacting disease trajectory.
About Edgewise Therapeutics
Edgewise Therapeutics is a leading muscle disease biopharmaceutical company developing novel therapeutics for muscular dystrophies and serious cardiac conditions. The Company’s deep expertise in muscle physiology is driving a new generation of first-in-class therapeutics. EDG-5506 is an orally administered skeletal myosin inhibitor in clinical trials in patients with Becker, Duchenne, and Limb-Girdle muscular dystrophies as well as McArdle Disease. EDG-7500, currently in a Phase 1 trial, is a novel cardiac sarcomere modulator for the treatment of hypertrophic cardiomyopathy and other disorders of cardiac diastolic dysfunction. The entire team at Edgewise is dedicated to our mission: changing the lives of patients and families affected by serious muscle diseases.
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