This year’s winning initiatives, spanning across four continents, include an online platform to improve peer-to-peer connections; a series of events designed to connect Duchenne families with healthcare professionals; a support program to help families navigate the emotional journey of living with a rare disease diagnosis; and an ambassadors program to raise awareness of Duchenne in schools.
[ RELATED: Apply Now for Duchenne STRIVE Grant Awards ]
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, the company explains in a media release.
“The role of patient advocacy organizations is now more vital than ever before, with the unprecedented events of this year disproportionately impacting many rare disease patients and communities. I am so proud of the continued support we are able to provide to these organizations all around the world through the STRIVE Awards, so that they can keep Duchenne communities supported and connected through this turbulent time.”
— Mary Frances Harmon, Senior Vice President, Corporate Relations, PTC Therapeutics
2020 STRIVE-Funded Programs
Programs awarded funding as part of the 2020 STRIVE Awards are:
- Argentina: Associacion Distrofia Muscular will develop an online platform for the neuromuscular diseases community across Argentina, which aims to help improve the quality of life of those affected by Duchenne by increasing social connections and providing accurate information to support users of the platform.
- Hungary: The Healing Goodwill Foundation will support Duchenne patients and their families in Hungary by hosting a series of events throughout the year to connect Duchenne patients and carers with healthcare professionals, as well as provide boys with Duchenne the opportunity for peer-to-peer interaction through a range of fun activities.
- Russia: The GAOORDI patient organization in Russia will provide emotional, practical and educational support to patients with Duchenne through the ‘Not Alone’ program, which aims to support families adjusting to life with Duchenne and improve the quality of home care that parents and caregivers are able to provide.
- United States: Cure Rare Disease will develop a Student Education & Life Science Immersion Program in the U.S. to provide students with correct guidance and tools to become Duchenne Ambassadors in their schools and the wider community.
“In an era where lockdowns and social distancing measures are keeping us physically apart, I have been inspired by the innovative solutions and resilience demonstrated by patient organizations supporting Duchenne communities to stay connected. Applications were strong in all categories, but this focus on connections was a key theme we noticed in this year’s STRIVE Awards winning programs.”
— Anna Kole, MPH, Public Health Professional and one of the judges
[Source(s): PTC Therapeutics Inc, PR Newswire]