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The ALS Worldwide Town Hall Meeting @ACG

On Monday, November 16, the American College of Greece hosted the ALS Worldwide Town Hall Meeting in the PIERCE Theater. It is an honor for the College to host such an initiative and, by extent, to support the Greek and international ALS community. A community that endures a horrific disease, and yet comes together globally with warmth, in tremendous support of one another. ALS/MDN is the complex and multi-faceted disease of Amyotrophic Lateral Sclerosis or, Motor Neurone Disease.

The event was held in the style of a true town hall meeting, including members of ALS Hellas Association, and the wider ALS community in Greece, with the audience extending globally, through the live-streaming of the evening. It is important to note that this event was of specific importance, as is it harder for the Greek ALS community to gain access to such information and support.  

ALS Worldwide – Optimism & Support

The event was organized by ALS Worldwide, a non-profit organization whose aim is to bring guidance, compassion, and hope to thousands of ALS/MND patients and their loved ones, in more than 85 countries.

ALS Worldwide Co-Executive Director Stephen Byer and Director of Outreach Sarah Byer offered information on current research, medical devices, and medications for symptom relief. The organization representatives expressed their gratitude to the College and extended an open invitation to anyone who might benefit from their free, personalized support, via videoconference, email, phone and in-person visits; “We don’t want anyone to ever feel like they’re alone,” said Sarah Buyer.

The organization was joined at the event by Dr. Ray Onders of Case Western Reserve University in Cleveland, Professor Achilleas Gravanis from the University of Crete, and Dr. George Patrinos from the University of Patras.

Dr. Ray Onders – A Better Life

Research surgeon Dr. R. Onders, presented his renowned developments which significantly improve quality of life for patients suffering from ALS/MND, namely the Diaphragm Pacing system for respiratory stability, achieved through minimally-invasive laparoscopic surgery, which he also trained Greek doctors to perform while on his visit to Greece. The further two developments he presented were the Low Profile Button feeding tube, and the Suprapubic Catheter.

Professor Achilleas Gravanis – Hope for the future

Professor of Pharmacology A. Gravanis, presented MicroNeurotrophins (MNT), a highly promising ALS drug developed by a team of Greek scientists. MNT mimics the naturally occurring neurotrophins, a family of proteins we all have from conception, and which keep our neurons alive; an imperative function, since our bodies are unable to replace neurons. However, these proteins are too large to be effectively absorbed by the human brain, making them an ineffective treatment; hence Gravanis’ research into MicroNeurotrophins, which after many animal trials is showing promising results.

Research on MNT is now being carried out in 30 laboratories across the world, including teams from the universities of MIT, Harvard, Cambridge, and Dresden. This collaboration has also led to the creation of the International ALS Consortium, and with the help and support of organizations such as ALS Worldwide, and EU grants, the expensive but vital research on the promising MNT can be continued. Researchers are also exploring MNT’s application in other degenerative diseases such as Alzheimer’s, Muscular Dystrophy, and Parkinson’s, and hope to move to human trials as soon as possible.

Professor Gravanis explained that the cause of most neurodegenerative diseases is still unknown, but emphasized that “Neurogenesis, the creation of neurons de novo, is the future.

Dr. George Patrinos – Encoded Secrets

Dr. Patrinos, a genetic researcher, presented his profound studies of the impact of genetics on ALS, particularly in respect to Greek patients. His research has been focused on the identification of genetic variants associated with sporadic, versus genetic or familial, ALS in Greek patients, which affects 95% of patients.

This work is exceptionally important, as it is the first time the complete genome sequencing of Greek patients has been analyzed. Patrinos is exploring different ethnicities and families, in an effort to understand this complex disease which is expressed with such varied phenotypes. Coming from the area of genetic diagnosis, Dr. Patrinos hopes that by providing earlier diagnosis, effectively contributing to the work of teams like Professor Gravanis’.

On understanding DNA, and hence the basis of such diseases, Dr. Patrinos said “We know the letters, and we know some words – but we can’t read the whole book.

The event included a Q&A session with the audience, and a hopeful message from Tony Pappoulias and Maria Chabesi of the ALS Hellas Association which, after being inactive for a year, has now been “adopted” by ALS Worldwide.

​More information on ALS Worldwide, and on ALS/MND, can be found on the organization’s website.