Partnership between Backpack Health and MPS SuperHero Foundation will empower patients and contribute to the advancement of MPS II research
Dover, MA – January 31, 2019 – The MPS SuperHero Foundation and Backpack Health today announced a partnership offering the Mucopolysaccharidosis II (otherwise known as MPS II or Hunter Syndrome) community Backpack’s health data management platform, a cloud based mobile tool that enables patients to store personal health records securely on any device. The platform provides patients and their caregivers full access and control of their health information, with the ability to translate, share and transport all data on any device.
“It is an honor to partner with Backpack Health, whose health data management platform will impact the lives of patients with MPS II, and the larger MPS community, on so many levels,” said Monica Anaya, president of the MPS SuperHero Foundation. “From seamless medical record keeping on handheld devices to managing and sharing health information for patients and their families, Backpack Health has gone above and beyond to ease the burden on a day-to-day basis for the MPS II community. As a partner, we are honored, and as parents to a child with a rare-terminal disease, we are grateful!”
Hunter Syndrome (MPS II) is a progressively degenerative genetic disease that almost exclusively affects males. The syndrome inhibits the body from breaking down the sugar that builds bones, skin, tendons and other tissues, leaving those sugars to build up in the cells and damage parts of the body, including the brain. The effects of the syndrome are different for every person. There is currently no cure.
Backpack Health and the MPS SuperHero Foundation are also partnering to collect de-identified, aggregated data. Upon patients’ consent, individuals using Backpack Health as part of the MPS SuperHero Foundation will have their data de-identified and entered into the registry to advance research and understanding of MPS II.
“Our partnership with the MPS SuperHero Foundation is an exciting step forward in supporting the MPS II community in health management and advancement of medical research,” said Jim Cavan, CEO and co-founder of Backpack Health. “Our expertise in helping rare disease patients take control of their own health as well as contribute meaningful data to medical research has allowed us to break barriers for rare disease communities, and we are thrilled to extend this to the MPS II community.”
About MPS SuperHero Foundation
MPS SuperHero Foundation is a parent-led nonprofit organization founded in 2016 by Monica and Avram Joseph. After their oldest son, Kalel, was diagnosis with MPS II (Mucopolysaccharidosis type II) these unbreakable parents took it upon themselves to not only save their sons life from this horrible disease, but they also made a pact to eliminate the disease entirely and make sure no other family has to deal with the same depressing state of mind knowing their child won’t live past 12 years old. With the help of their board members consisting of family, friends and incredible supporters, the foundation made its impact across south Florida to spread awareness, help families in need, and fund a cure for MPS II.
Since then, the foundation has banded with a conglomerate of parent-led nonprofit organizations across the country to raise funds for the cure that would do exactly what they were set out to do; eliminate MPS II. As the funds are nearly completed and trial is soon to launch, the foundation won’t stop there! Several types of MPS currently exist and many children lose their lives to this group of inherited conditions. Monica, Avram, and their team of SuperHeroes will not quit until all children of MPS are saved.
About Backpack Health
Backpack Health, LLC builds secure, innovative information tools to help people manage their health journey – including wellness, illnesses, injuries, and chronic health conditions. The Backpack Health mission is to make it easy for everyone to access, own and control their health information to support better health care and attain better health for themselves, their loved ones and their communities. Backpack Health provides a platform for organizations to engage patients, collect up-to-date data and build communities around the globe. To assure data protection for its users’ information, Backpack Health complies with the EU General Data Protection Regulation (GDPR), adheres to its data protection principles, and participates in the EU-U.S. and Swiss-U.S. Privacy Shield Frameworks. Learn more at www.backpackhealth.com.
