PTC Therapeutics marked Sept. 7 — World Duchenne Awareness Day — by announcing the four winner of the company’s 2016 global STRIVE Awards (Strategies to Realize Innovation, Vision and Empowerment) program.
STRIVE awards are granted in recognition of extraordinary excellence and innovation by nonprofit organizations that serve rare disease communities, such as the Duchenne muscular dystrophy (DMD) community. They acknowledge the vital role patient advocacy groups play in giving people affected by these diseases a public voice.
Four organizations — in Australia, India, Norway and the U.S. — received the 2016 STRIVE Award out of entries received from 26 groups across 15 countries, with applications reviewed by an independent, external panel of experts with knowledge in rare diseases, patient advocacy, and funding initiatives.
Entries were judged on such criteria as program feasibility, creativity, budget, impact, and sustainability, and the judging panel commended the collaborative and innovative nature of the winning applications.
“We are delighted to present our STRIVE Awards to these organizations, who play an incredibly important role in supporting and improving the lives of boys and young men with Duchenne muscular dystrophy,” Stuart W. Peltz, PhD, chief executive officer of PTC Therapeutics, said in a press release. “We are pleased that our support through STRIVE can help patient groups bring to life ideas with tremendous potential to benefit the Duchenne community.”
Each of the winning organizations will receive an unspecified grant to support their proposed project:
Australia’s Muscular Dystrophy Queensland will use the award to help young adults with DMD share their experiences, and offer advice and guidance to younger patients through social media, podcasts, and online materials.
Norway’s Foreningen for Muskelsyke (FFM) will apply the award to running a residential weekend course to educate boys on the benefits of healthy eating, provide practical advice pertaining to personal care, and on other life skills that will increase their self-esteem.
In the United States, the DMD research and support organization CureDuchenne will use the STRIVE Award to support the launch of a Virtual Durable Medical Equipment Expo, an interactive education and networking website to provide DMD caregivers and family members with an up-to-date information resource, as well as reviews on a wide range of mobility equipment to help keep people with DMD mobile and active longer.
In India, the Bengaluru, Karnataka-based Dystrophy Annihilation Research Trust (DART) will use STRIVE award proceeds to support the launch of DART Mobile. Healthcare professionals traveling in a customized vehicle will raise awareness of DMD, provide counseling, and offer medical assistance and advice to patients and families unable to travel long distances to clinics. Through this initiative, DART will also conduct important research into DMD.
DART, the first lab in India focusing on muscular dystrophy, was founded in 2012 by Ravdeep S. Anand with the aim of providing solace and support to families of children with the disease. Anand has been working toward a deeper understanding of MD since discovering his son was affected by DMD in 2003. With India having more than 500,000 boys with DMD, Anand found it startling that no proper research was being done on DMD in the country.
“We are delighted to have won this STRIVE Award, which will help us make a huge difference to the lives of patients and their families,” Anand, now DART’s president, said in a release. “The grant we receive will support the launch of a mobile unit that will bring care and counseling to people affected by Duchenne muscular dystrophy in Karnataka and raise awareness of this often-overlooked disease, and we are looking forward to getting started.”
DART’s Research Centre includes a full-fledged cell culture lab and a cell imaging system, and a team of skilled professionals working toward realistic ways of treating DMD at the genetic level.
DART has also conducted medical check-up camps, awareness programs like walkathons, nature walks, radio shows, and print media articles. DART’s activities have also been presented at various international and national conferences.
“We have been truly inspired by the creativity and passion demonstrated through the award entries we received,” said Mary Frances Harmon, global head of Patient Advocacy, PTC Therapeutics. “With patients at the center of everything we do, PTC shares the commitment of these patient organizations. We feel confident that this year’s winning entries will have a positive, lasting impact on the lives of many people affected by Duchenne muscular dystrophy.”
PTC has also launched a disease awareness website, DuchenneAndYou, to engage the broader DMD community and provide information regarding the disease. The site is in English, and translations are now available in Arabic, English (UK), French, German, Italian, Portuguese, Spanish, and Turkish.
PTC began the STRIVE program for DMD in 2015 to support initiatives that will benefit the DMD community by increasing awareness, diagnosis, and education, and to foster the development of future patient advocates. More information about the program and the 2016 STRIVE winners is available at: www.ptcbio.com/en/about-ptc/ptc-strive-awards-program/.
PTC Therapeutics, Inc.
Dystrophy Annihilation Research Trust (DART)
Muscular Dystrophy Queensland
Foreningen for Muskelsyke