In 2005 and early 2006, when the website founder commissioned the initial research search for JPA information, and there was little progress in the past 3 years to report, the founder of www.fightjpa.org was faced with a special challenge. Clearly parents were holding false hopes that some miracle cure was around the corner in the research pipeline, when there was little (or nothing) to report.
So she asked a number of non-profits the same questions, searching for an answer. What non-invasive, non-toxic treatments were available to children and youth with JPA and how could she help accelerate new treatments and a cure? In answer to Linda’s queries, Childhood Brain Tumor Foundations, (Maryland) (CBTF) Medical Advisors underscored the need for more rapid progress and recognized the need for JPA designated funds. This foundation’s Senior Medical Advisor spearheaded the first JPA Professional Workshop worldwide, brought on two distinguished Co-Directors for the development of the Agenda and Speaker List, and jointly set the goals to define the most promising research avenues for future JPA research. Dr. and Mrs. Murray Janower, the Janower and Ragnoni families along with CBTF Maryland provided seed funding, while Linda raised the remainder of the funds needed from other corporate, individual and non-profit sponsors.
In May 2006, 18 world renowned scientists met to focus scientific discussion with individual presentations and group discussions on JPA, and recommend new and advanced interdisciplinary science, to avoid duplication of limited resources, and forward collaborative approaches to this challenging, underfunded disease.
The results of the workshop can be viewed in the Executive Summary, Agenda, and Workshop Participants. They can also be viewed at http://www.childhoodbraintumor.org/. Clearly this Workshop set a new direction for accelerating JPA research to improve the quality of life and survival of JPA patients. (The results are also available for reproduction and distribution by request to CBTF Maryland.)