McKesson Patient Care Solutions Inc., a Pittsburgh-based business division of McKesson Medical-Surgical Inc., will sponsor a regional Family Day that is open to epidermolysis bullosa (EB) patients and their families at the Carnegie Science Center. The event will be hosted by EB advocacy group DebRA of America and will kick off National EB Awareness Week, October 25-31. The company, which has a history of support in the EB community, will also make a notable donation to DebRA of America during the week in Atlanta, Ga. at Medtrade, the annual Home Medical Equipment tradeshow.
Along with representatives from DebRA of America, 16 local McKesson Patient Care Solutions (MPCS) employee volunteers will be on hand to help at the Family Day and meet with the community. Attendees will enjoy a private lunch, interactive exhibits and socializing with other EB families from the region. The event is expecting to draw more than 60 members of the EB community from within a four-hour drive of Pittsburgh.
“Kids and adults suffering from EB don’t often have the opportunity to socialize with others who have this rare disease and who understand its unique challenges,” MPCS Account Manager and EB Community Supporter Danielle Malchano said. “The opportunity for kids to play with each other and adults to build and strengthen connections in a fun, supportive setting is so important.”
DebRA of America trademarked EB as the “worst disease you’ve never heard of” because it is a rare genetic disorder that is characterized by the presence of extremely fragile skin and recurring blister formation caused by trauma or minor friction, like hugging. Today, there is no cure for EB, but genetic research is making progress toward additional treatment options and a cure.
Brett Kopelan, executive director of DebRA of America, has an intimate relationship with EB as he is the father of a child with a severe form of the disease. He and his family have come to rely on the MPCS team for help with managing EB for his 8-year-old daughter. “MPCS has really helped ease some of the stress of living with this terrible disease. A dedicated EB team, with one point of contact, who knows EB and the best products, has really streamlined the ordering process and making sure we get exactly what we need for our daughter. When Rafi was first born, we used a different distributor. And, it’s hard to articulate how much better and easier it is to work with the dedicated and passionate team at MPCS,” said Brett.
For the past seven years, MPCS has raised or donated funds to support finding a cure and to help meet needs in the EB community with organizations like DebRA of America. MPCS carries wound care supplies that EB patients need and supports EB patients with a dedicated Advocate team who help with ordering supplies, having them shipped to patients’ homes as well as educating them on insurance guidelines and assistance with managing claims.
“As the head of DebRA of America, the only national nonprofit that provides all-inclusive support to the EB community, it is easy to say that MPCS has been an incredible partner in the fight against EB. MCPS has supported two of our programs, the nurse educator program and the wound care distribution center. Without MPCS, I am not sure these vital programs would exist today,” said Brett.