PTC Therapeutics’ Global Program Strives to Fund Innovative Projects of Patient Advocacy Organizations

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by Mary Chapman |

STRIVE grants

PTC Therapeutics has launched its sixth annual global grant program for patient advocacy organizations that seek to develop innovative projects for the Duchenne muscular dystrophy (DMD) community.

Currently focused on DMD, the Strategies to Realize Innovation, Vision and Empowerment (STRIVE) program supports nonprofits that seek to create empowering and collaborative initiatives, particularly those that address unmet needs. It emphasizes disease awareness, education, and cultivation of the next wave of Duchenne patient advocates.

The application deadline is April 30. Winners will be announced Sept. 7 on World Duchenne Awareness Day. Proposals for the one-year grant — capped at $30,000 — will be reviewed by a committee of experts in rare diseases, patient advocacy, and funding initiatives. Each proposal must include a timeline and itemized budget.

“After celebrating the five-year milestone of the STRIVE awards in 2019, we continue to be hugely proud of helping patient organizations from around the world provide vital support to the Duchenne community by bringing novel and pioneering projects to life,” Mary Frances Harmon, senior vice president of corporate relations at PTC Therapeutics, said in a press release.

“We know that the advocacy organizations supporting the Duchenne community still have so many more inspiring and creative initiatives, and we are as excited as ever to see the proposals that will be submitted this year,” she added.

To date, STRIVE has supported 28 programs aimed at enhancing the lives of DMD patients, even those in some of the world’s most remote locations. Past winners have improved access to diagnosis and treatment, provided emotional support to families, and developed opportunities for patient empowerment and independence.

ENLACE Distrofia Muscular Duchenne Becker AC was a 2019 award recipient. Established 20 years ago, it’s still the sole organization in the northern Mexico states of Chihuahua and Nuevo Leon to provide specialized medical care and emotional support to patients with Duchenne and Becker muscular dystrophies.

STRIVE funding enabled ENLACE to buy specialized equipment, including diagnostic and monitoring devices, and to continue offering free interdisciplinary medical consultations with specialists in cardiology, neurology, and pulmonology.

“The funding we received from the STRIVE award last year has been fundamental in supporting our mission to acquire life-saving medical equipment, allowing us to deliver medical care and emotional support for those affected by Duchenne in northern Mexico,” said Graciela Mendez Covarrubias, of ENLACE.

Another 2019 recipient, Israel-based Little Steps, sought to address the desire among many adult Duchenne patients to advance their education and establish a career. STRIVE funding created what turned out to be a successful website-design training program for those with DMD. The program was subsequently offered to teens with DMD to give them an opportunity to identify specific areas of interest, and to provide early hands-on experience in web design.

Visit this site for details about other winning projects.