STRIVE Awards Recognize Efforts of Duchenne MD Patient Groups Worldwide

Patricia Inácio, PhD avatar

by Patricia Inácio, PhD |

MYO-101, LGMD2E

PTC Therapeutics announced the winners of the 2018 global Strategies to Realize Innovation, Vision and Empowerment (STRIVE) awards, which recognize the efforts of nonprofit organizations working to serve the Duchenne muscular dystrophy community.

This year’s winners are patient organizations located in Canada, Argentina, Brazil, Croatia, Hungary, Ireland, Slovenia and Turkey. The announcement was made Sept. 7, which is World Duchenne Awareness Day.

Each winning organization will receive a grant to help develop its project.

“We are always struck by the dedication, vision and creativity of the non-profit organizations who enter the STRIVE awards,” Mary Frances Harmon said in a press release. Harmon is senior vice president, corporate relations, at 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,” Harmon added.

This year’s competition included 45 applications from organizations around the world. A panel of independent, external experts in rare diseases, patient advocacy and funding initiatives, reviewed the applications. They analyzed each proposal in light of its potential for innovation and empowerment of the Duchenne community.

“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,” Kole added.

Muscular Dystrophy Canada is one of the successful winners. The Canadian nonprofit will set up personal empowerment programs (PEPs) to promote patients’ independence, social skills and community engagement. This project also aims to ease access for Duchenne carriers to vital information, resources and support.

“We are thrilled to have won this STRIVE Award, which will help us make a real difference to the lives of people affected by Duchenne,” said Barbara Stead-Coyle, CEO of Muscular Dystrophy Canada.

“The grant will help us to run Personal Empowerment Programs which help people with Duchenne to live more independently, be more socially active and involved in the community, and better informed about managing their condition,” Stead-Coyle added.

The complete list of 2018 STRIVE Award winners is available here.