Emeritus Professor of Psychology
Ben Williams is currently Professor of Psychology Emeritus at the University of California, San Diego, where he has been a faculty member since 1973. He received his Ph.D in experimental psychology from Harvard University in 1970 and has published over 100 journal articles and book chapters.
He was diagnosed with a glioblastoma brain tumor in 1995. In 2002 he authored Surviving ”Terminal” Cancer: Clinical Trials, Drug Cocktails, and Other Treatments Your Oncologist Won’t Tell You About. He has also written a number of articles pertaining to brain cancer treatment and more generally about how the medical system for treating cancer could be improved. These are posted on his web page
Richard Gerber, PhD
Richard Gerber is Director of Student Enrichment in the Computer Science Department at the University of Maryland in College Park, where he formerly served as a professor. He is a specialist in the field of computer systems, and has published many papers in that area. Additionally, Richard is an an accomplished saxophonist, and has played with many renowned musicians from the eighties and beyond.
In 2007, while living in Le Marche, Italy, he was diagnosed with a glioblastoma multiforme, and was given a very poor prognosis. Using his scientific training, he scoured the medical literature in an effort to craft a treatment plan for his disease, from which he has remained recurrence-free as of today. Richard is one a small handful of long-term glioblastoma survivors, and dedicates much of his free time to consulting with brain tumor patients around the world.
Gauthier Bouche, MD
Medical Director, Anticancer Fund
Gauthier holds a MD from the University of Poitiers, France and a MPH from the University of Bordeaux, France. After a few years as assistant professor in public health, epidemiology and clinical research at the University of Poitiers, his main focus is now on clinical research in cancer. He serves as the Medical Director of the Anticancer Fund.
Lydie Meheus, PhD
Managing Director, Anticancer Fund
Lydie Meheus, PhD, is Managing Director of the Anticancer Fund (ACF) and Executive Director of Reliable Cancer Therapies (RCT). She holds a PhD in Protein Biochemistry. In 1987, Meheus began work as a senior researcher at Innogenetics, Belgium, where she subsequently held numerous positions. When Innogenetics incorporated its therapeutic activities into a new company, GENimmune, in 2007, she became Vice President for R&D. She began working at RCT in 2009 and ACF in 2013.
Scientist, Patient Advocate
Pan Pantziarka, based in London, is a scientist working at Anticancer Fund. He is the joint coordinator of the Re-purposing Drugs in Oncology project that the ACF has founded in partnership with the US not-for-profit organization Global Cures. In addition to looking at re-using existing non-cancer drugs as new sources of cancer treatments, the project also looks at the social and institutional factors influencing cancer policy. By training Pan is a data scientist and author but has switched fields to oncology. He has previously published in the area of cancer pre-disposition syndromes and is also chairman of the George Pantziarka TP53 Trust.
Richard E. Kast, MD
Clinical Psychiatrist, Neuro-oncology Researcher
After graduation from the University of Copenhagen, Faculty of Medicine and completion of a medical internship year at the State University of New York at Buffalo Hospitals Richard worked as a General Medical Officer with the US Indian Health Service and various other postings before returning for a psychiatry residency, graduating from the University of Vermont, School of Medicine, Department of Psychiatry. Richard has been in general psychiatry practice since then. In over 100 peer-reviewed publications Richard has explored a wide variety of subjects, mainly on inflammation and drug repurposing in cancer. The last two dozen publications were devoted to growth stimulation mechanisms in glioblastoma and repurposed current drugs to inhibit them.
Stephen Western is a patient advocate and medical writer, founder of the website Astrocytoma Options, whose entry into brain tumor research was inspired by the diagnosis of a close friend. His overriding goal is to interpret the scientific literature on behalf of patients and caregivers, thus enabling more well-informed decisions to be made concerning the various treatment options available.
Matthew De Silva
Patient Advocate, Founder of Notable Labs
Matthew De Silva is a cancer patient advocate and startup founder driven by a personal connection to the disease. In the fall of 2013 his father was diagnosed with three Glioblastoma Multiforme brain tumors. He searched for clinical trials, only to find that most were not open to his father. With more research it was clear that there was evidence for FDA approved therapies that could be used in combination to treat the disease, but these were all generic drugs with no pharma sponsor for large clinical trials.
This led him to start Notable Labs in August 2014, which is a personalized testing service for cancer patients that prioritizes combinations of FDA-approved treatments that can be immediately prescribed by a doctor without a clinical trial. The company is building a novel testing service to match the best combination of FDA approved drugs for the patient. The company identifies these personalized treatments using custom-built robotics to empirically test thousands of drug combinations on samples of the patient’s tumor. The test informs the doctor of drug options they can prescribe for their patient directly. Notable has labs in San Francisco and is backed by Y Combinator, Founder’s Fund, and First Round Capital.
Entrepreneur, Patient Advocate
After losing a close family member to glioblastoma multiforme, Dominic set about making a documentary film (www.survivingterminalcancer.com), with two clear objectives: Primarily, to educate future patient populations as to the barriers beyond biological problems that restrict their access to treatments at the front of the innovation curve, and to do so in a medium that would be fast and easy to understand, and straight-forward to translate into other languages. Secondly to build support and assemble a team of engaged partners who actually want to investigate the group of long term survivors featured in the film, to verify scientifically if their ‘cocktail’ strategy actually played any role in their surviving this deadly disease.
Professor Marc-Eric Halatsch
Vice chair of neurosurgery at the University of Ulm in Germany, Marc specializes in spinal and oncological neurosurgery. Working with some of the most deadly tumors known to medicine, Marc considers it an ethical responsibility of the medical community to think outside the box for patients facing terminal prognosis. His central involvement in innovative efforts such as CUSP9 and MAP-ND illustrate his patient sensitive approach to his practice.
Professor Lars Bullinger
Heisenberg professor for “Personalized Tumor Therapy” and head of Oncology at the University of Ulm, Lars has continued to play a key role in translational research focusing on the integrative analyses of “omics” and NGS data to further refine molecular tumorclassification and implement insights into innovative precision medicine approaches
STATUS: CONCEPTUAL / LOCATION: GERMANY (ULM, BONN, LEIPZIG)
A multi centre feasibility study: Coordinated Undermining of Survival Paths in Newly Diagnosed Glioblastoma Patients in addition to standard of care (CUSP-ND trial)
Glioblastomas (GB) are the most frequent and the most aggressive brain tumours in adults. They are associated with a dismal prognosis, poor quality of life and high risk of recurrence. Whenever possible, surgical resection is performed. Adjuvant treatment with concomitant radiation therapy and temozolomide (TMZ) is able to substantially prolong survival. Since the addition of TMZ to the standard of care, clinical trials adding single agents in GB have repeatedly failed.
Attempts to target multiple pathways with multiple agents within the same trial are the exception in GB. This is mainly due to the predominant use of new compounds with unknown or ill-characterized safety profile and drug interactions potential. Researchers have suggested that targeting multiple pathways at the same time could be more effective. Doing this requires careful selection of drugs with both a well-known safety profile and a strong rationale supporting its use against GB. One such strategy is known as CUSP9*. The CUSP9* trial protocol has received a positive opinion by the German competent authorities (BfArM) following a scientific advice meeting in early 2014 [personal communication with Prof. Marc-Eric Halatsch].
Crowdsourcing for implementing rigorous trials that matters to the end-users has been recently acknowledged as a promising strategy to accelerate and optimize funding for clinical research. Along those lines, a unique patient-centric not-for profit group (International Initiative for Accelerated Improvement of Glioblastoma Care or IIAIGC) was expanded to design a trial of an intervention similar to CUSP9* in newly diagnosed GB patients.
The ethical grounding for the trial is that given a palliative standard of care (SOC), in the context of such a genetically unstable and heterogeneous disease as GB, patients cannot be expected to wait for a known palliative SOC to fail generating new genetic mutations that complicate future therapy, before being granted access to more expansive treatments.
Furthermore, it is widely accepted in professional medical circles that the sequential methodology of treatment application in use today, fails to harness the potential for treatment synergies that could be critical in reaching a tipping point for effective therapy. Today’s SOC for GB of concomitant chemotherapy and radiotherapy is a clear example of the benefits of simultaneous treatment in oncology.
The patient community is hereby demanding acknowledgement from the regulatory authorities that when facing a terminal diagnosis, the parameters of risk analysis must be broadened to empower positive treatment from diagnosis and so maximize chances of restricting disease development.
Finally, the IIAIGC believes that by building this trial as SOC plus adjuvant therapies, patients will not be denied the current best proven treatment whilst attempting to deliver a meaningful attempt at saving their lives. We anticipate extraordinary demand for such a trial from patients and we believe this provides the moral impetus for approval.
Could you tell us how you got engaged in the field of oncology?
Brain cancer and cancer generally first came on my radar
This is an interview recorded for the film Surviving Terminal Cancer. For the complete film, please visit www.survivingterminalcancer.com
The crowdfunding campaign in support of this initiative will be launched shortly.
Please consider following this initiative in order to receive an email update.
Follow CUSPND Updates