- Awards Program Recognizes Excellence and Innovation in the Duchenne Muscular Dystrophy Community -
SOUTH PLAINFIELD, N.J., Sept. 7, 2018 /PRNewswire/ -- PTC Therapeutics, Inc. (PTCT) is pleased to announce the recipients of the Company's 2018 global STRIVE Awards (Strategies to Realize Innovation, Vision and Empowerment) program, designed to support nonprofit organizations serving the Duchenne muscular dystrophy community. The impact of the STRIVE Awards will be felt across three different continents, with awards going to patient organizations in Argentina, Brazil, Canada, Croatia, Hungary, Ireland, Slovenia and Turkey. The announcement is made as the international Duchenne community marks World Duchenne Awareness Day.
"We are always struck by the dedication, vision and creativity of the non-profit organizations who enter the STRIVE awards," said Mary Frances Harmon, Senior Vice President, Corporate Relations, PTC Therapeutics. "PTC is passionate about making a difference for people affected by Duchenne and we are excited to see the positive impact this year's projects will have on the Duchenne community. It's a true privilege for PTC Therapeutics to be able to provide the support necessary to make these excellent projects possible."
Award entries were submitted by 45 organizations from around the world. An independent panel of external experts, knowledgeable in rare disorders, patient advocacy and funding initiatives, judged the entries for innovation, vision, and empowerment. The winning organizations will receive a grant to make their proposed project a reality.
"All of the submissions reflected unique and thoughtful solutions to the diverse, unmet needs in the global Duchenne community," said Anna Kole, Founder of The Charity Shop Paris, Global Rare Disease Consultant and Judge. "These projects will play a very important role in supporting and improving the lives of patients and families where it is most needed."
PTC Therapeutics is pleased to announce the following 2018 STRIVE Award recipients:
Argentina: Asociación Distrofia Muscular (ADM) will provide specialized medical care to patients in areas with limited financial resources and no access to Specialist Health Centers.
Brazil: Association of family members and friends of sufferers of Neuromuscular diseases will run a seminar tour aimed at educating and empowering patients, carers, health and social care professionals.
Canada: Muscular Dystrophy Canada will run Personal Empowerment Programs (PEPs) to encourage independent living, promote social interaction and community engagement, and to facilitate access to vital information, resources and support.
Croatia: Rare Diseases Croatia will run an online educational project for medical and social care students to improve the time to Duchenne diagnosis and access to appropriate medical care.
Hungary: The Healing Goodwill Foundation - Duchenne Hungary will hold meetings to promote interconnectivity and communication between patients and to share information on clinical trials, rehabilitation, social integration and patient advocacy.
Ireland: Muscular Dystrophy Ireland will run an Independence & Engagement Project to promote independent living and to facilitate group projects that encourage social engagement and innovation.
Slovenia: Muscular Dystrophy Association of Slovenia will run a week of social activities for a group of young people with Duchenne to enjoy with their peers, without parents, in a fully adapted environment.
Turkey: Fight Against Duchenne and Neuromuscular Disorders Association of Turkey will launch a collaborative project using Skype video conferencing to offer online psychological support to boys with Duchenne in the comfort of their own houses.
Duchenne is a rare genetic disorder that results in progressive muscle weakness from early childhood, with subsequent loss of lower and then upper body function. Most children with Duchenne are wheelchair-bound by their early teens. PTC established the STRIVE awards program to support initiatives that will benefit the Duchenne community by increasing awareness, diagnosis and education, and fostering the development of future patient advocates.
About STRIVE Awards Program
PTC began the STRIVE Awards program for Duchenne in 2015. For further information about the program and each award recipient, please visit the STRIVE website: www.ptcbio.com/en/about-ptc/ptc-strive-awards-program/.
About Duchenne Muscular Dystrophy
Primarily affecting males, Duchenne muscular dystrophy 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 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. It is estimated that a nonsense mutation is the cause of Duchenne in approximately 13 percent of patients.
About PTC Therapeutics, Inc.
PTC is a science-led, global biopharmaceutical company focused on the discovery, development and commercialization of clinically-differentiated medicines that provide benefits to patients with rare disorders. Founded 20 years ago, PTC Therapeutics has successfully launched two rare disorder products and has a global commercial footprint. This success 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.
In addition, PTC has launched its global disease awareness website, DuchenneAndYou.com to engage the broader Duchenne community and provide valuable information regarding the disease state.
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