PPMD, Sarepta Report Program for Genetic Testing at No Cost

Parent Project Muscular Dystrophy (PPMD) and Sarepta Therapeutics, Inc.

today announced a new nationwide program from PPMD to assist individuals with Duchenne muscular dystrophy in accessing genetic testing. The program will be administered by PPMD, a leading voice for patients and families impacted by Duchenne. Support for the initiative will be provided by Sarepta, a developer of innovative RNA-based therapeutics. Through the new program, called Decode Duchenne, PPMD will offer genetic testing at no cost to eligible patients who are unable to access testing due to barriers such as a lack of or insufficient insurance coverage. Decode Duchenne is expected to launch in the fourth quarter of 2013 through PPMD's DuchenneConnect, an online resource and registry for patients and families affected by Duchenne and their healthcare providers. For patients with Duchenne, genetic testing is used to identify the genetic mutation and confirm the diagnosis. In addition, genetic testing can be used to determine a patient's eligibility for certain clinical trials. Despite the potential benefits of testing, in some cases patients are unable to access genetic testing through their insurance provider. "We believe all patients with Duchenne should have the opportunity to receive genetic testing in order to understand their genetic mutation, have confidence in their diagnosis and learn about opportunities to participate in clinical trials of promising investigational treatments," said Pat Furlong, president and chief executive officer of PPMD. "This program seeks to address barriers to genetic testing that have long frustrated the Duchenne community and to help vulnerable patients and families." "We are pleased to support Decode Duchenne, an important initiative from PPMD and DuchenneConnect to help families and their physicians navigate a sometimes difficult process to receive genetic testing," said Chris Garabedian, president and chief executive officer of Sarepta Therapeutics. "Sarepta's support for this new program is part of our broader commitment to develop new potential therapies, as well as provide education and resources, that may help to improve outcomes for boys and young men with Duchenne." To participate in Decode Duchenne, patients must: -- Have a confirmed diagnosis or be suspected of having Duchenne or Becker muscular dystrophy based on clinical symptoms, as assessed by their treating physician, and have a positive creatine kinase (CK) test. -- Have not previously had genetic testing, or must require additional genetic testing to identify a causative mutation, as determined by the DuchenneConnect Coordinator, a board-certified genetic counselor. -- Provide documentation to confirm the patient's lack of insurance coverage, insufficient insurance coverage, or a denial of coverage for genetic testing. -- Be citizens or legal residents of the United States. -- Register on DuchenneConnect. Additional eligibility criteria may apply, and the DuchenneConnect Coordinator can help interested patients and their families determine if they are eligible to participate. Patients and families can learn more about the Decode Duchenne genetic testing program by visiting DuchenneConnect at www.duchenneconnect.org, or by contacting the DuchenneConnect Coordinator at coordinator@duchenneconnect.org or (201) 937-1408. Information is also available through Sarepta's new online resource center Let's Skip Ahead, which is available at www.skipahead.com.