Nan Songer, a special educator at Syracuse University’s Center for Human Policy, was one of the most progressive advocates for the educational rights of children with disabilities. She strongly believed the educational needs of students with cancer and blood disorders were overlooked. Nan’s vision to create national standards initially brought a group of 15 professionals together in Syracuse, New York in 2005.
It was this group of 15 hematology and oncology school re-entry specialists who met to discuss their challenges, frustrations, successes and hopes for this population of students. After their initial meeting, Nan realized the efforts of this group had immense potential and urged them to reconvene to develop standards of practice for educating this population. Unfortunately, Nan became ill in 2005. She appointed David Gordon (Chairperson 2005-2011) to lead this group and to carry out her vision.
The group reunited at Stony Brook University in 2006 and 2007, and split into working groups and began drafting topic-specific standards of practice. In 2008, Winthrop Hospital hosted the next meeting where the group continued to draft the standards of practice.
Finally, in March 2009, the group convened at North Shore-LIJ Hospital where they decided to officially form as a 501(c)(3) not-for-profit professional association called the Association of Pediatric Hematology and Oncology Educational Specialists (APHOES). The inaugural APHOES conference was hosted by Greenville Children’s Hospital in Greenville, South Carolina in April 2010.
Historically, APHOES has engaged passionate professionals in the development of national standards to address the educational challenges of hematology and oncology patients. The common experiences of our first members included the creation of individual school re-entry programs for which standards did not previously exist. Each program consisted of varying budgets, personnel, and professional backgrounds. The shared desire to expand the efforts to meet the educational needs of children with hematologic and oncologic issues nationwide led APHOES members to create a document that is provided to organizations seeking to form or improve a school re-entry program, called Practice Recommendations.