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Mason Shaffer Foundation
Mason was first diagnosed with Osteopetrosis on August 21, 2009. Even though we would not receive the "official" diagnosis until conclusive genetic testing came back several weeks later, this is the date that will always stick in our family's mind. Everybody remembers where they were and what they were doing on significant dates in history, and August 21st, 2009, is a date in the Shaffer household that will never be forgotten.
Our doctors informed us that the only cure option for Mason was a stem cell transplant. The best possible donor for Mason would be his older brother Reilly. But after genetic testing, we learned that neither Reilly nor either of Mason's parents was a potential match for a stem cell transplant. Next, our doctor Anders Kolb at DuPont Hospital for Children initiated a search through the National Marrow Donor Program (Be The Match) to find a match for Mason as soon as possible. In early September, we learned that 3 different cord blood donations had been identified as perfect matches for Mason. On October 1, 2009, Mason received his transplant from DONATED cord blood stem cells. Today Mason is cured of Osteopetrosis. That's right... CURED!!!!
Through the inspiration from our son, we are highly motivated to take Mason's success story and pay it forward. It sounds very cliché, but what else can you do when a potentially tragic event strikes your family. We knew very early in Mason's journey that we were going to take our experiences and make a difference in other people's lives.
We developed the Mason Shaffer Foundation to expand the network of qualified cord blood donation facilities, fund cord stem cell research, provide education on the cord blood donation process, and develop an informational support network for families affected by Osteopetrosis.
The Mason Shaffer Foundation launched a cord blood donation program in May 2011. We worked with the public cord blood bank Vitalant New Jersey and the hospital network Main Line Health to offer the first cord blood donation program in the Philadelphia area. The Mason Shaffer Public Cord Blood Program provides expectant families with the educational guidance necessary to make an informed decision on cord blood donation. This joint effort means that women giving birth at participting hospitals have the opportunity to donate their baby's lifesaving umbilical cord blood for FREE. Donated cord blood is listed on the NMDP's Be The Match registry for use by any patient in need of a stem cell transplant.
When Mason was diagnosed with Malignant Infantile Osteopetrosis (MIOP), we found it very difficult to find current, accurate, and reliable information about this extremely rare disease that only strikes 1 in 250,000 live births. It was difficult for our family to find other families with the diagnosis. Therefore, the Mason Shaffer Foundation also provides an information and support network for families called M.A.S.ON. (Mason's Awareness & Support for Osteopetrosis Network). We will hold our 1st Annual Patient/Family Support Meeting this October 20 in Philadelphia.
As we are approaching Mason's 4th anniversary of his life saving transplant, we sit in true humility, joining with ALL of the MIOP families... those of us with our angels still here with us, and those of us who have angels in heaven... some of us have other children who carry both genes, or babies that carry one gene, and some of us do not know our children's status... this disease has changed us as parents, challenged us, scared us, made us stronger, more humble... made us more human... the Mason Shaffer Foundation helps us remember every day that there is only one reason that allowed Mason to still be with us: that one mother donated one umbilical cord. We will NEVER forget that and will work to ensure that this miracle is available to all who need it!