Benefit # 49 (of 71) California Stem Cell Program: On “Tuesdays with Morrie”: BATTLING ALS
By Don C. Reed
“Tuesdays with Morrie”, is the true story of the last days of Morrie Schwartz, and the visits of his student, author Mitch Albom.
“Tuesdays” became a huge international favorite. To his great credit, the author used proceeds from the book to help with Schwartz’s medical bills. Albom went on to write numerous other best-sellers, including “Five People You Meet In Heaven”–and he has his own radio show—which I got to visit!
It was a phone-in radio show, a good thing, saving me a drive to Detroit, Michigan.
Monday, June 11th, was my wife’s birthday, and she sat in the good chair in my study, while I endured the last nervous moments before the show. (You can listen in if you like, the url is https://www.mitchalbom.com/radio/ I was on at 3:35, Pacific Standard Time, for about seven minutes.)
My goal was to talk about the California stem cell program, the subject of my new book, “CALIFORNIA CURES: How the California Stem Cell Program Is Fighting Your Incurable Disease!”
Writing about the California Institute for Regenerative Medicine (CIRM) is like trying to sum up America…. It is hard to know where to begin describing it, because the program has done so much.
But re-reading “Tuesdays with Morrie” gave me focus.
Morrie Schwartz died of ALS, Amyotrophic Lateral Sclerosis, Lou Gehrig’s disease, called motor neuron disease in many countries.
Every year, six thousand more Americans are diagnosed with ALS.
It is a death sentence. Patients generally live just two to five years after the diagnosis. ALS is an auto-immune disorder, meaning the body attacks itself, killing its own motor nerves, primarily in the spinal cord. As the motor nerves die, messages from brain/spinal cord to muscles don’t get through.
“When a healthy person wants to move a leg, for example, the brain sends a signal…to the motor neuron that enables the movement. Patients with ALS develop progressive paralysis…”
–“Cedars-Sinai Receives Approval to Test Novel Combined Stem Cell and Gene Therapy for ALS Patients” Oct. 20, 2016.
The muscles degenerate; control of the body goes away. Eventually, the patient loseshis/her ability to breathe.
We have lost far too many good people to ALS,including:
Lou Gehrig, the New York Yankee baseball player, for whom the condition is named;
Dwight Clark, the great San Francisco Forty-niner football player;
David Ames, patient advocate, who fought to pass Proposition 71;
Hugh and Douglas, two sons of Dianne Winokur, who serves on the board of directors for the California Institute of Regenerative Medicine;
And most recently, the great scientist Stephen Hawking, who somehow defied the odds and lived to be 79.
Before going on the show, I visited the website of the California stem cell program (www.cirm.ca.gov) to learn about the battle against ALS.
The California Institute for Regenerative Medicine (CIRM) fights chronic disease; that is its purpose, to take on diseases called “incurable”, and step by step work towards their defeat. The scientists there are honest folk, not telling you something wonderful just to make you feel good temporarily. They work on hope, not hype.
Of ALS, CIRM’s President, Dr. Maria Millan said:
“Our objective is to find a treatment for patients ravaged by this neurological condition for which there currently is no cure.”
No cure… yet.
How goes the fight? Hard, slow, but making progress. So far, CIRM has spent roughly $79.4 million to learn about the disease and the methods of fighting it.
Right now, CIRM is helping fund two ALS human trials: one at Cedar-Sinai Regenerative Medicine Institute, and the other at a private corporation, BrainStorm Cell Therapeutics. They are funded by CIRM to the tune of roughly $16 million each. (Cedars-Sinai, $16,168,464; Brainstorm, Inc., $15,912,390.)
This is serious funding. By way of comparison, another California research program, the Roman Reed Spinal Cord Injury Research Act, received only about $15 million for its entire ten year program!
Cedars-Sinai, led by Clive Svendsen and James Baloh, is trying to boost the power of astrocytes, star-shaped cells which support the motor nerves. They will be boosted by a “nerve fertilizer” called Glial-Derived Neurotrophic Factor (GDNF).
A second clinical trial, by a private organization called Brainstorm Inc., uses mesenchymal stem cells from the patient’s bone marrow. “These stem cells are then modified to boost their production of (several) neurotrophic factors …to support and protect (motor nerves) … destroyed by the disease.”
Now in multiple sites across the country, the BrainStorm effort began as an international effort in Hackensack, New Jersey and Petach Tikva, Israel.
“The CIRM funding will enable the company to test this therapy, called NurOwn, in a phase 3 trial involving around 200 patients.”
–ALS Fact Sheet, California’s Stem Cell Agency.
Right now, the goal appears to be to slow the progression of the disease, to gain time, years of healthier life to spend with their families.
But that’s not enough. We need a cure. That’s why we have to continue funding CIRM, to renew the program the battle can go on—to victory.
Remember Morrie Schwartz!
Don C. Reed is the author of “CALIFORNIA CURES: How the California Stem Cell Program is Fighting Your Incurable Disease!”, from World Scientific Publishing, Inc., who published the work of the late Professor Stephen Hawking.