Pre-Register to Donate

The Mason Shaffer Foundation is actively working with The New Jersey Cord Blood Bank and The Main Line Health System to develop the Mason Shaffer Cord Blood Program. This collaboration would bring the first cord blood donation program to the Philadelphia area and make Main Line Health the first hospital system in the Philadelphia area to actively participate in a cord blood donation program.

The Mason Shaffer Cord Blood Program will provide expectant mothers/families with the educational guidance necessary to make an informed decision on cord blood donation. The joint effort between the NJCBB, MLH Hospitals, and The Mason Shaffer Cord Blood Program means that all women giving birth at a Main Line Health System Hospital will have the opportunity to donate their babies’ lifesaving umbilical cord blood for FREE. NJCBB and MLH staff will work closely with expectant mothers/families to coordinate donation collection and transportion to the NJCBB facility. Donated cord blood is listed on the National Marrow Donor Program (NMDP) registry for use by any patient in need of a stem cell transplant.

The Foundation

As parents of a child whose only option of survival was a stem cell transplant, we wanted to do something that would allow our family a way to share our positive outcome. The primary purpose of the Mason Shaffer Foundation is to take Mason’s success story and pay it forward. It sounds very cliché, but what else can you do when a potentially tragic life event affects your family’s life. 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.

There are many differing statistics on the likelihood that you will utilize your own child’s cord. It is everyone’s own personal and private decision to decide what they will do with their child's cord blood. The Mason Shaffer Foundation advocates donating your cord blood.

Our Foundation will work collaboratively with established cord blood programs to expand the network of qualified hospitals in the greater Philadelphia area. We will work with hospitals to manage the costs of donating umbilical cords to public blood banks for the purpose of transplant and research. The Foundation will also provide educational materials to the obstetrics departments and maternity patients in the greater Philadelphia area. Because we believe more diseases and disorders can and will be treated with umbilical stem cells, The Foundation will also fund continued cord stem cell research programs.

When Mason was diagnosed with MIOP, we found it very difficult to find current, accurate, and reliable information about his extremely rare disease. With an estimated 1 in 250,000 live birth frequency, it was difficult for our family to find other families who were affected by the diseased. After diagnosis, we were left with little outside resources beyond those at A.I. duPont. Therefore, the Mason Shaffer Foundation will also provide an information and support network for families affected by Osteopetrosis and Stem Cell transplant.

Mason’s treatment took place at the A.I. DuPont Hospital for Children in Wilmington, DE. The length of an in-patient hospital stay for a stem cell transplant can be difficult on a family. We experienced ups and downs but have identified several key aspects that helped our family make it through Mason’s hospital stay. We plan on providing the A.I. duPont Hospital for Children Blood and Bone Marrow Transplant Unit with supportive services to families. Items like family care packages, computers, and other identified needs of the unit.

1. Expand the network of Hospitals that participate in Cord Blood Donation programs

  • Coordinate and collaborate with established cord blood programs to recruit and fund local hospitals to become cord blood donation centers.
  • Our initial target market will be hospitals in the greater Philadelphia area.
  • Expand to other hospitals in the Northeast United States

2. Promote education on the cord blood donation process:

  • Provide accurate, up-to-date information on current cord blood donation programs
  • Distribute already published material from established cord blood programs
  • Further develop original MSF publications to distribute to newly recruited and qualified donation centers.
  • Collaborate with regional obstetricians, hospital obstetrics departments, and maternity patients to increase the number of donated cords
  • Provide information to expectant parents outside of our immediate region which will direct them to qualified cord blood collection hospitals in their local area

3. Fund continued umbilical stem cell research

  • MSF to help support and fund continued Stem Cell Research to further treatment options and cure goals of the following diseases but not limited to:

    Inherited metabolic diseases.

    Hemoglobinopathies (Sickle Cell, Thalassemia)

    Severe immune deficiencies

    Leukemia

    Lymphoma

4. M.A.S.O.N - Mason’s Awareness & Support for Osteopetrosis Network

  • Create a support network for families of children with Osteopetrosis, including:
    • Links for Physical and Occupational Therapy for patients with Osteopetrosis
    • Improve and update clinical information on Osteopetrosis (MIOP) made available to the public via the Foundation’s website at www.MasonShafferFoundation.org
    • Links to resources for updated clinical information
    • Increase the general awareness of the disease
    • Social networking to allow families to share their success stories, questions on MIOP and stem cell transplant, and personal experiences
    • Doctors and Transplant Units

5. Provide ancillary needs to family members during extended stay in-patient transplant treatment at A.I. duPont Children’s Hospital’s Blood and Bone Marrow Transplant Unit

  • Develop family and parent support groups
  • Donate family care packages
  • Computers and other electronic equipment that families can use during their extended stay
  • Music, Books, DVD’s, etc for entertainment while confined to the BBMT Unit

 

The Mason Shaffer Foundation is a 501(c)3 non-profit organization. All donations are tax-deductible.
board of directors
Co-Presidents: Sarah A Shaffer and Marc A Shaffer

We are the parents of Reilly & Mason Shaffer. We are your average family of four. We are parents of a son cured of Osteopetrosis through a stem cell transplant and a son who was an extremely strong older brother throughout the entire transplant journey. We are extremely fortunate to have two wonderfully unique boys. We have been inspired by how our children persevered through a truly unimaginable experience. We believe there was a reason our family was presented with this unthinkable situation. We were meant to do something good with it. We will make a difference in other people’s lives. That is our goal.

Marc has a degree in Mechanical Engineering from Bucknell University and a MBA from The Pennsylvania State University. Sarah has a Bachelor of Social Work from Southern Connecticut University and a MSW from The University of Pennsylvania.

 

Chief Medical Consultant: Dr. E. Anders Kolb
When I first met Mason, or really Mason's blood smear, it was about 5am. A colleague had called me to look at the peripheral blood smear of a new patient admitted to the hospital late the night before to evaluate for the possibility of leukemia. Mason had an increase in the number of blasts (immature white blood cells) in his blood. However, Mason's blood did not look like he had leukemia, it looked like he had normal bone marrow that overflowed into his blood. A chest x ray done on admission showed very dense bones for a 5 1/2 month-old and I was fairly certain that Mason did not have leukemia. I was fairly convinced he had osteopetrosis. So the first time I met Sarah and Marc Shaffer, I had to tell them that what Mason had was not a cancer of the blood, it was potentially far worse. Through genetic testing we confirmed that Mason did indeed have osteopetrosis. Within a couple weeks we identified a matched cord blood unit and shortly thereafter Mason underwent a bone marrow transplantation. Through every step of this process Marc, Sarah and Mason always looked forward towards a cure. They fought hard to keep Mason healthy, and thanks to the National Marrow Donor Program and an anonymous cord blood donor, Mason is cured.
Pediatric Medical Consultant: Louis Giangiulio M.D., FAAP
Dr. Giangiulio is Mason's pediatrician and the founder of Sugartown Pediatrics, LLC, a private solo medical practice with offices in Malvern and Newtown Square, PA.  He serves as the school physician at The Phelps School in Malvern, PA and is the medical consultant for the entire Penn-Delco School District.  He began his medical career as an Army pediatrician, including a deployment to Afghanistan in 2003-04 in support of Operation Enduring Freedom. Dr. Giangiulio completed his internship and residency in pediatrics in Washington DC at Walter Reed Army Medical Center and the National Naval Medical Center in Bethseda, MD. He was stationed for three years at the US Military Academy at West Point, NY as a general pediatrician where he also consulted as the wrestling team physician.

He is credentialed as a staff pediatrician at Main Line Health and continues to attend to newborns at Paoli, Bryn Mawr and Lankenau Hospitals as well as The Birth Center in Bryn Mawr, PA.
Treasurer: Robert Brooks
Hob Brooks works as a sales manager for Sage Publications, an academic publisher with particular emphasis on the social and behavioral sciences. He works closely with the academic libraries of many of the world's leading institutions of higher learning to make sure that their faculty and students have seamless access to key journal literature to keep their research programs continuously on the cutting edge. Hob has been interested in working with a non profit organization for several years as a way to apply his knowledge of the scholarly research community to give back and help to make a difference. After meeting the Shaffers, and particularly after watching Mason's miraculous recovery, Mason's Mission became the obvious choice. Hob holds a B.A. in History from Bates College and a M.A. in Education from Tufts University.
Secretary: Geoffrey Shaffer
When my wife, Deb, and I found out about Mason’s diagnosis, instinctively we wanted to know what we could do to help. We then soon learned that Mason would need a stem cell transplant, and other than a small chance of his brother being an exact match, those cells would come from a cord blood donation. That is where we saw our chance. Deb and I would be welcoming our first child in the fall, and immediately started researching cord blood donation information. What we found when we tried to donate cord blood for Mason, or anybody in need, was a cycle of phone calls with no real answers. The hospital didn’t know how to direct us, and other conversations told us to talk with the hospital. It was in essence a “wild goose chase.” From this experience, I realized that cord blood donation is a need that is not easily accessible for those who would like to do it. The promotion and education of the cord blood donation process is just one of the many goals I hope to accomplish as part of the Mason Shaffer Foundation.

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Information contained on this Web site is not a substitute for a doctor's medical judgment or advice. The MSF recommends that you discuss your specific, individual health concerns with your doctor or health care professional. The materials and discussions presented here describe current treatment options and drugs or treatments that may be under study, and are for informational purposes only. Treatment options or donation procedures should be determined by an individual and his or her treating doctor based on the individual's overall health, age, disease, disease stage, and, if transplant is being considered as a treatment option, the availability of a suitably matched adult donor or umbilical cord blood unit.

© 2010 The Mason Shaffer Foundation, Inc.