Jonathan Eric Agin, JD
Executive Director for the Max Cure Foundation and co-founder, member of the Board of Directors and General Counsel emeritus, of the Children’s Cancer Therapy Development Institute, a non-profit childhood cancer research biotech located in Beaverton, OR.
Jonathan was recently appointed to the National Cancer Institute Brain Malignancy Steering Committee as a Patient Advocate. He also participates on the Patient Advocate Steering Committee at the National Cancer Institute. He is also a Section Editor for the Cancer Knowledge Network (Canadian Oncology Journal), frequent contributor to the Huffington Post, and frequent presenter for the community health care network platform Brightbod. He is one of the most recognized names in the childhood cancer community.
He has testified before the United States Congress on issues of identity theft impacting the childhood cancer community, which ultimately led to the introduction of bipartisan legislation named after his daughter Alexis (HR 2720, The Alexis Agin Identity Theft Protection Act of 2013). This legislation was later enacted into law as part of the overall budget deal of 2013.
He was selected to provide public comment before the FDA pedODAC Committee on the topic of biopsy in children with DIPG (an inoperable and almost universally fatal pediatric brain tumor), and has been a featured presenter and panellist at numerous conferences and symposiums. Jonathan frequently interacts with members of Congress and their staff, the White House, as well as various regulatory agencies and other cancer organizations in an effort to improve the plight of children with cancer. He is an original founding steering council member of the DIPG Collaborative. Jonathan became involved in the childhood cancer community following the diagnosis of his daughter Alexis at the age of two with DIPG in April 2008. Alexis battled heroically for thirty-three months until January 14, 2011. Jonathan is a licensed attorney and a former civil defense trial lawyer from Washington, DC.
Philip Falzon Sant Manduca
Philip Falzon Sant Manduca's 7 years old daughter was diagnosed with DIPG in 2015. Her symptoms were clinically evident in March 2015 through a deteriorating sense of balance, heightened insecurity, loss of athleticism and an increasing incidence of headaches and emotional volatility.
Upon diagnosis, Philip was supplied with the standard of care (SOC) "death sentence" by the medical experts. He quickly realised that he was on his own in the mission to prolong and even save his daughter’s life. He assumed the mantra “Hard and Fast” and pioneered contracted schedule changes to existing CED treatment cycles; he focussed intensively on treating BOTH velocity and volume in the disease; and he argued that doses, dosages and drug concentrations mattered even more than the drug itself. Most of all, he realised from the first prognosis that he had no time to lose choosing old pathways to a constant morbid outcome.
From the outset he believed that he only had one advantage – he could take educated, calculated latitude with treatment to save his daughter, as she had already been “abandoned” to a terminal fate by the medical establishment. He was shocked by the doctors’ lack of knowledge of how to treat the disease despite their endless laboratory research supported by sizeable grants from charitable money over many years, their primary focus on publishing research papers, and the level of brand name hospital facilities they operated from, all of which resulted each and every year with a 99+% failure rate in treating DIPG. In any other walk of life, they all would have been viewed with extreme disappointment. They have always “sold” hope, but have never delivered on efficacy.
Philip joins the Council alongside a selected team of DIPG medical experts all of whom have publicly declared that “enough is enough”, and that it is time to change the process of getting modern science to the treatment table, to change the philosophy of a single drug/single clinic/single doctor mania to constructing plural drug protocols with a greater focus on aggregation, synergy and tolerable levels of toxicity. This is not about homeopathy, or alternative medicines. It is about plurality, sequencing, aggregation and synergies of existing science and approved drugs and delivery mechanisms.
Philip has established Elisabeth's Foundation, a DIPG charity with a focused remit to fund the construction and operation of a specialised paediatric brain cancer clinic and research laboratory to combine, aggregate and sequence known drugs to treat DIPG.
In 2015/2016, Philip contracted privately to manufacture a water soluble version of Panobinostat (MTX-110) so that it could be infused directly into his daughter's pons via CED, replacing the SOC oral administration of Panobinosotat, which does not pass through the BBB in sufficient quantity without damaging the rest of the child’s organs. His daughter was the first child to receive Panobinostat via CED and ha received more infusions via CED than any other person living or dead to date. She was the first DIPG child to combine CED delivered HDAC’s with Checkpoint inhibitors. Pioneering "off map" is good. We know what happens “on map”.
Philip has recently engineered a new vaccine therapy for DIPG which his daughter will also be the first to receive using gold plated nanoparticles as a delivery mechanism.