UK Patient Advocacy Group (PAG) named one of three recipients of PTC Therapeutics’ 2021 STRIVE Awards for Duchenne muscular dystrophy
UK Patient Advocacy Group (PAG) named one of three recipients of PTC Therapeutics’ 2021 STRIVETMAwards for Duchenne muscular dystrophy
- UK PAG is the recipient of the STRIVE Award, out of a total of three, and 58 entries
- The Pathfinders Neuromuscular Alliance will use PTC grant to support teenagers and young people living with Duchenne make the important transition into adulthood
United Kingdom, Sept. 8, 2021 – PTC Therapeutics today announced a United Kingdom (UK) based Patient Advocacy Group as one of three recipients of its global STRIVE Awards program. This is the seventh consecutive year PTC has awarded grants to support non-profit organisations serving the Duchenne muscular dystrophy (Duchenne) community. Recipients of this year’s Award include the Pathfinders Neuromuscular Alliance, who plan to develop a suite of resources, developed by people living with Duchenne, for people living with Duchenne, which address many of the important questions adolescents have about the transition into adulthood. This is a newly identified area of unmet need, as boys living with Duchenne are living longer, due to updates in disease management. Two organisations from Brazil were also awarded funding as part of the 2021 STRIVE Awards.
Pathfinders Neuromuscular Alliance is a UK based, user-lead charity that provides information, advice, and peer support to teenagers and adults with muscle-weakening conditions, such as Duchenne. Pathfinders is a unique charity in that it is both for and run by people with muscle-weakening disorders. All trustees and staff have muscle-weakening conditions and are committed to sharing their experiences to create a service that can help others with similar disabilities. Their proposed program will aim to produce resources that provide tips and guidance on the important questions teenagers and young people may have around their transition to adulthood. The multimedia resources will cover important physical, mental, and social messages along with communicating the vital role of healthcare professionals.
“As a community led by people living with neuromuscular conditions, we know first-hand the value of empowering our members by giving them the tools and support they need to achieve their own objectives, whatever these may be,” said Jamie Hale, Co-CEO Pathfinders Neuromuscular Alliance.
Further programs awarded funding as part of the 2021 STRIVE Awards are:
- Brazil: The AGADIM (Associação Gaúcha de Distrofia Muscular) patient group will develop a residential model that provides appropriate accommodation and support for people living with Duchenne. The ‘Duchenne Community’ will provide opportunities to transition to adult life and live independently, with autonomy and freedom, whilst ensuring that those with severe limitations are cared for by certified and licensed professionals.
- Brazil: The ASCADIM (Associação Sul Catarinense de Amigos e Familiares de Portadores de Distrofias Musculares Progressivas) will provide the only free physiotherapy clinic for people with progressive muscular dystrophies in South Brazil with the equipment and furniture required to deliver much needed care for people living with Duchenne. With their renovated and appropriately equipped headquarters, they will be able to increase the number of patients they are able to help.
“I am continually impressed with the passion and commitment of those working in and supporting the Duchenne Community. Their determination, motivation, and adaptability shone through more than ever in this year's applications,” said Mary Frances Harmon, Senior Vice President, Corporate Relations, PTC Therapeutics. “The STRIVE Awards continue to provide organisations across the world with opportunities to improve outcomes for people living with Duchenne. Our new category, ‘Transition to Adulthood’, celebrates initiatives that support a key stage in life for those living with Duchenne and allows them to look forward to independent, fulfilling and rewarding lives."
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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 each award recipient, please visit the STRIVE section of the PTC website: https://www.ptcbio.co.uk/our-company/grants-and-donations/strive/.
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.
About PTC Therapeutics
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 and diversified pipeline of transformative medicines and our mission to provide access to best-in-class treatments for patients who have an unmet medical need. The Company’s strategy is to leverage its strong scientific expertise and global commercial infrastructure to maximize value for its patients and other stakeholders. To learn more about PTC, please visit us at www.ptcbio.co.uk.
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