"The new award category recognizes the recent progressions seen in the treatment and management of Duchenne, with many individuals now living longer, fulfilled lives as adults – a milestone that seemed unachievable just a few years ago," said
Until recently, children with Duchenne did not usually live beyond their teens.1 However, improvements in cardiac and respiratory care mean that life expectancy is increasing, with many Duchenne patients now reaching their 30s and 40s.1,2 As a result of this, there is an increasing emphasis on quality of life and psychosocial support for the Duchenne community, meaning there is an urgent need to coordinate and improve the transition from childhood to adulthood.3
Since inception, the STRIVE program has supported over 30 patient initiatives from not-for-profit organizations around the world. Winning programs have improved access to diagnosis and treatment; created career opportunities for adults with Duchenne; raised awareness of Duchenne in educational, public and healthcare settings; and provided emotional and physical support to caregivers. Further details of all previous winning programs, as well as interviews with last year's winners discussing the impact of the STRIVE Award on their organization and local community, can be found here.
The deadline for submissions is
About the STRIVE Awards Program
PTC began the Strategies to Realize Innovation, Vision, and Empowerment (STRIVE) Awards program in 2015 to support initiatives that benefit the Duchenne community by increasing awareness, diagnosis and education and fostering the development of future patient advocates. Each year, an independent panel of external experts with knowledge in rare diseases, patient advocacy and funding initiatives, judge the entries for innovation, vision and empowerment.
For further information about the program and previous recipients, as well as guidance and support with writing grant entries, please visit the STRIVE section of the PTC website.
About Duchenne Muscular Dystrophy
Primarily affecting males, Duchenne muscular dystrophy (Duchenne) is a rare and fatal genetic disorder that results in progressive muscle weakness from early childhood and leads to premature death in the mid-twenties due to heart and respiratory failure. It is a progressive muscle disorder caused by the lack of functional dystrophin protein. Dystrophin is critical to the structural stability of all muscles, including skeletal, diaphragm, and heart muscles. Patients with Duchenne can lose the ability to walk as early as age ten, followed by loss of the use of their arms. Duchenne patients subsequently experience life-threatening lung complications, requiring the need for ventilation support, and heart complications in their late teens and twenties.
More information regarding Duchenne is available through the
PTC is a science-driven, global biopharmaceutical company focused on the discovery, development and commercialization of clinically differentiated medicines that provide benefits to patients with rare disorders. PTC's ability to globally commercialize products is the foundation that drives investment in a robust pipeline of transformative medicines and our mission to provide access to best-in-class treatments for patients who have an unmet medical need. To learn more about PTC, please visit us on www.ptcbio.com and follow us on Facebook, on Twitter at @PTCBio, and on LinkedIn.
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Muscular Dystrophy Association. Duchenne Muscular Dystrophy (DMD). Available at: https://www.mda.org/disease/duchenne-muscular-dystrophy Accessed: December 2020. National Institute of Neurological Disorders and Stroke. Muscular Dystrophy: Hope Through Research. Available at: https://www.ninds.nih.gov/Disorders/Patient-Caregiver-Education/Hope-Through-Research/Muscular-Dystrophy-Hope-Through-Research#3171_9 Accessed: December 2020
- Birnkrant DJ, et al. Diagnosis and management of Duchenne muscular dystrophy, part 1: diagnosis, and neuromuscular, rehabilitation, endocrine, and gastrointestinal and nutritional management. Lancet Neurol. 2018;17:251–267.