I have decided to enter a new clinical study being conducted on MNTF, motoneurotrophic growth factor. The study is being conducted at the Neurological Institute of Columbia University. I begin the pretesting tomorrow.

MNTF is different from other growth factors researched to date in that it is a Master Regulator. Therefore, rather than targeting a specific nervous system gene, it activates through multiple pathways to target over 4,000 central nervous system genes. MNTF is generally formed, and expressed, during the 9th week of embryonic development. It plays an important role in the development of the nervous system. In adults, it selectively promotes motoneuron regeneration. The drug is currently being researched for a variety of CNS diseases and disorders. Like other growth factor drugs, the in-vitro, mouse and animal studies have been very impressive (reversing PD in mice; regenerating nerves cells in-vitro). Mickey Mouse never has to worry again about brain disorders. Phase II studies are currently underway for ALS and Stroke patients. The PD study is just starting and I will be in the first group. My rationale for participating is:

1. The peptide-based drug is a very small molecule, so it easily crosses the blood brain barrier. NO SURGERY is required, like in the other growth factor studies. I will be getting the synthetic form of MNTF in an infusion. I go every other day over the course of two weeks.
2. Although no PD studies have been done yet, the safety studies on ALS and Stroke patients have been excellent, with virtually no side effects (which has been true with the other growth factor drugs also).
3. Since no surgery was involved, the study received FDA approval to focus on early stage PD as opposed to the other studies that only included mid to late stage. This study only took subjects who have never been on any dopaminergic drugs.
4. The early results on ALS and stroke have been very good, at least anecdotally (the studies have not yet concluded). The FDA fast-tracked the drug for ALS approval over the summer.
5. I'm only prevented from joining another drug study for about 4 months. So, as I'm always actively looking for interventional studies to join, I'm not blocked for that long.
6. Finally, who knows, maybe this one will actually be the one that works…… It will happen eventually, hopefully sooner rather than later!

By the way, for any one newly diagnosed that is interested in participating in research studies, whether they be interventional like this one or just observational, please look at the current trials listed on Fox Trial Finder. https://foxtrialfinder.michaeljfox.org/
It’s a great site and that’s how I found this trial. We need people to participate in these studies so we can get them moving along faster and maybe find better drugs for symptom relief and progression modification. I truly believe that we, PWP, must be more actively involved in every step of the drug research process. From deciding on what types of drugs are researched, how the studies are designed, and reviewing the statistical results (whether successful or not). But, this also puts the responsibility of participation directly on our shoulders. No one else can do it but us.

Gary

This sounds very exciting. Thank you for sharing. I wish you all the best!

Thank you Gary for taking part in this exciting trial. We wish you well. Please keep everyone updated on the progress.

Our best to you,
J&B

Thanks so much, Gary. If we don't check out some of these trials, it will be another 50 years before we find something better. (It has actually been about that long since the discovery of levodopa - the best medical therapy for Parkinson's.

Peggy