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 8 years old daughter was diagnosed with DIPG in 2015 when she was 5. 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 medics. He realised that he was on his own in the mission to prolong and even save his daughter’s life. He pioneered infusion schedule changes to existing CED treatment cycles; he focussed intensively on treating BOTH velocity and volume of the disease tumour; 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 by choosing old therapeutic pathways to a constant morbid outcome.
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 with far too therapeutic metrics imposed upon the researchers by the charities to force positive results. He observed their primary focus was on publishing research papers, residence in academic prowess and safety (their and not their patients) and not on therapeutic success, all of which resulted each and every year with a 99+% failure rate in treating DIPG. In DIPG, and indeed in medicine generally, hope raises money. But parents want more than the mirage of hope that has been peddled for over 60 years with no progress in outcome. They want their children's lives saved. Period.
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.
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 ineffective 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 MTX-110 via CED, is the only one that has received more than three doses, and is the only one that has received it in the optimal concentration; she has 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 one or more checkpoint inhibitors; she was the first child to receive a DIPG peptide vaccine via gold nanoparticles. In all, his daughter has had over 15 novel therapies.
Philip's primary focus now is on achieving therapeutic visibility via biopsy, with minimal invasiveness. He believes that applying any and all therapies blindly, as is the current standard, will always lead to failure. We must get more answers to replace too many "dont knows".