ORLANDO, Fla., June 28, 2016 /PRNewswire-USNewswire/ -- Parent Project Muscular Dystrophy (PPMD), a nonprofit organization leading the fight to end Duchenne muscular dystrophy (Duchenne), today announced it has received a grant from Marathon Pharmaceuticals to help support PPMD's ongoing Certified Duchenne Care Center (CDCC) Program, a network of certified centers across the country that offers standardized comprehensive care and clinical services to people and families living with Duchenne. The grant will enable PPMD to provide additional resources to improve patient care and patient recruitment for clinical trials through the centers.
"When PPMD launched our Certified Duchenne Care Center Program two years ago, our initial aim was to recognize outstanding centers that were treating patients and families living with Duchenne," said Pat Furlong, PPMD's Founding President and CEO. "Now that we have 11 CDCCs, with plans to certify 4-6 more by year end, we want to make sure that the CDCCs are continuing to lead the community in harmonized, optimal care. This generous grant from Marathon Pharmaceuticals will have a significant impact on our plans to take our Certified Duchenne Care Center Program to the next level – identifying and addressing gaps in Duchenne care and research, and expanding our reach further into the Duchenne community."
Highly regarded in the Duchenne community, the CDCC Program has created a network of centers across the United States capable of providing increased access to comprehensive care and services to patients and families living with Duchenne. PPMD's CDCC Program recently announced its 11th Certified Duchenne Care Center.
"We recognize that the Duchenne community needs the kind of comprehensive services and support provided by the Certified Duchenne Care Center Program," said Jeff Aronin, Chief Executive Officer, Marathon Pharmaceuticals. "We're pleased to support this innovative program, as part of our ongoing commitment to improving the care and experience of those with Duchenne."
Update on CDCC Program
The announcement was made at PPMD's 22nd Annual Connect Conference, where Furlong provided an update on the CDCC program. In 2012, PPMD convened a group of 17 institutions, parents, and representatives from advocacy and legislation, in its first Transforming Duchenne Care Initiative (TDCI) meeting, which set out to define Duchenne comprehensive care and services. Attendees discussed components of comprehensive care, discrepancies in care and services, and ways to reduce those discrepancies.
In 2014, PPMD launched the Certified Duchenne Care Center Program, the natural evolution of its robust TDCI meeting, through which PPMD awards qualified centers the title of Certified Duchenne Care Center. This designation is an effort to ensure centers:
- Maintain the highest standards in clinical and sub-specialty services
- Rapidly apply new evidence-based knowledge
- Minimize heterogeneity in clinical research outcomes, and
- Comply with standards in clinical care that were established by the CDC Care Considerations.
As part of its ongoing mission to end Duchenne, PPMD continues to insist that all people with Duchenne receive comprehensive care.
"The response to the CDCC program from the community has been tremendous," said Kathi Kinnett, MSN, CNP, PPMD's Senior Vice President of Clinical Care and co-director of Transforming Duchenne Care Initiative (TDCI). "When PPMD launched our certification program two years ago, we had no idea that the Duchenne community would respond so positively. Families have come to rely on our certification as an indication that these centers are the best of the best. We will continue to certify more centers across the country, recognizing teams of physicians for their leadership in Duchenne care and enabling families to make the best choice for the care of their child."
To learn more about PPMD's Certified Duchenne Care Center Program and a map of currently certified centers, visit PPMD's website.
About Parent Project Muscular Dystrophy
Duchenne is a fatal genetic disorder that slowly robs young men of their muscle strength. Parent Project Muscular Dystrophy (PPMD) is the largest most comprehensive nonprofit organization in the United States focused on finding a cure for Duchenne muscular dystrophy—our mission is to end Duchenne.
We invest deeply in treatments for this generation of young men affected by Duchenne and in research that will benefit future generations. We advocate in Washington, DC, and have secured hundreds of millions of dollars in funding. We demand optimal care, and we strengthen, unite and educate the global Duchenne community.
Everything we do—and everything we have done since our founding in 1994—helps boys with Duchenne live longer, stronger lives. We will not rest until every young man has a treatment to end Duchenne. Go to www.ParentProjectMD.org for more information or to learn how you can support our efforts and help families affected by Duchenne. Follow PPMD on Facebook, Twitter, and YouTube.
About Marathon Pharmaceuticals
Marathon Pharmaceuticals, LLC, is a biopharmaceutical company that develops treatments for rare diseases, with a focus on patients who currently have no treatment options. The company's pipeline of new medicines includes treatments for rare neurological and movement disorders. Marathon is headquartered in Northbrook, Illinois, with offices in Chicago, New Jersey, and Washington D.C. For more information, visit www.marathonpharma.com.
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SOURCE Parent Project Muscular Dystrophy