Sex, Stem Cells, ALS #IceBucketChallenge
By Eileen Fleming
As of Saturday morning, The ALS Association had received $62.5 million in donations compared to $2.4 million during the same time period last year (July 29 to August 23).
On Saturday morning three friends unexpectedly stopped in and one of them is being worked up for ALS -or a similar lethal neurodegenerative disorder.
Just prior to taping our #IceBucketChallenge we caught up on what he has been through and could be facing because there is no cure for ALS yet;
But stem cells may hold some answers!
#IceBucketChallenge from Fleming/Kasmir/Falcone Family at YouTube HERE and our financial donation has been mailed to Mayo Clinic Dept. of Development Rochester, MN for ALS Stem Cell RESEARCH
I wrote the following in 2005, inspired by then President George W. Bush over his stem cell policy.
Excerpted from KEEP HOPE ALIVE: Sex at 69 and Stem Cell Research
…Jake began his day an hour before dawn and he always awoke: wide awake. He whistled while he shaved and dressed but Terese would cover her head with a pillow and would wish he would shut up. She had a rule to never speak until after her third cup of coffee, so instead bit her lip until Jake would be out of ear shot. The couple read different books, had different hobbies and interests, and were both asocial solitaries who gave each other a lot of space but when together; neither was ever bored.
“Jake, sometimes it seems so hard to believe it has been fifteen years since you hadto quit playing handball. You were more devastated about that, then ever loosing an erection. It is still so vivid in my mind that day you had the MRI and we were all so sure you had ALS. I sat in that waiting room praying for a miracle and then the radiologist came out and asked me where your wheelchair was because he had never seen anyone with as severe a herniation of C 6-7 walking around before. And you played handball the day before!”
“I figured I had ALS back then. I still am pissed that Kat got it instead of me. But, I certainly had all the classic symptoms and my cousin Nick had been diagnosed with it right at the same time that I was admitting my body was failing me.”
“I suppose for the rest of our lives everyday we will remember Nick and Kat.”
“That’s how it should be. They remain present when we remember them. No matter how horrific the burning down my arms is, how annoying these spastic muscle spasms are, nor how sometimes I fall down because of my foot drop, I am grateful to have spinal cord damage and not ALS. After fifteen years I am still able to be productive and contributing to society and be fully independent.
‘If I had had ALS, I would have been dead over ten years ago. When I imagine what gifts the world lost when my cousin Nick and our Kat succumbed to Lou Gehrig’s Disease at such early ages, it proves once more how fragile and fleeting is life and how precious every day truly is.
“Nick was going to concerts up until a few weeks before he died at peace while his wife slept next to him. What a gift to go peacefully and without disturbing anyone. Nick never complained about the cards he was dealt and everyone in his presence knew they were blessed just to know him.”
…..Over Cajun spiced Redfish and fresh garden vegetables and bread that had burnt more than a little Jake assumed his lecturer role and informed Terese, “IF it is actually true that the Koreans have been able to take a fresh egg, remove the nucleus and transfer the nucleus of a diseased tissue cell the next step is to grow that cell line in a culture to determine where the cell goes bad and the disease process begins. Then science will seek to learn how to prevent that disruption in the cell which will lead us to learn how to heal, and not just treat symptoms. Medicine seeks to heal and I imagine The Divine Physician wants us to learn all we can so that we may heal and not just treat symptoms. God speaks to us in so many ways; science, medicine, technology and ethics. The conundrum is, do we use the technology just because we have it?”
“Jake, I think God does want us to use our full potential, to use our minds and imaginations so we can do good things to help people. Witnessing a loved ones suffering is not easy and how much more difficult it is for the sufferer! We should be compassionate and learn all we can to help another. I don’t like the thought that science would be using what could be a baby and I certainly would not want to make the decision as to when life begins.”
“There is no reason to use any cells that are older than two weeks. Until the fourteenth day after fertilization of the egg there is no identity as a human being. At two weeks the central cleavage occurs and this is when twinning occurs. But now, consider when does the soul arrive?”
“Jake, you know I believe we develop our souls as we live our life and that everything is grace.”
“Everything is grace, and maybe you are right about the soul. I just don’t know.”
“Well how can anyone really know? The best we can do is imagine and that’s what I imagine; that it takes a lifetime to develop a soul.”
“What will you think when some soulless scientists clones a human being?”
“Too creepy. Do you really think it will happen?”
“Who knows what another will do? But look again at that article in the Journal and you will see a table listing key elements of the national Academies’ Guidelines for Human Embryonic Stem Cell Research. The Academy has previously stated that absolutely no research at reproductive cloning of a human should be conducted. I do suppose it can happen, some people have too much money for their own good and not every scientist nor physician is ethical. The thing is, American government policy cannot control the scientific world. Our research is lagging far behind and it’s like trying to out law guns and drugs. As long as there is a market, there will be providers.
“The other thing is the French and South Koreans are so far ahead of us we may never catch up. I wonder if the noises Bill Frist and Nancy Reagan have been making on this issue can influence the President to rethink his stand?
“I imagine any thing can be turned around with the right dialogue and the facts on the ground are that all over America embryos are being flushed down a drain because the couples whom they belong to no longer want any more children and do not want to donate their left over embryos to infertile couples.”
“Jake, I think you just hit the nail on the head, being pro life means one honors ALL life and NOT waste the potential of any life form.”
KEEP HOPE ALIVE is an historical fiction inspired by Dr Diab, a 1948 refugee from Majd Krum in the Upper Galilee- read an excerpt from 16 Days in Israel Palestine HERE
Nicholas Falcone, from Brooklyn, Flanders New Jersey and Glendale, AZ, passed away April 8, 2005 in Glendale.
In 2005, Eileen Fleming established WeAreWideAwake.org in response to her first of 8 trips to both sides of The Wall as a public service.
Eileen is the Administrator for FREE VANUNU and TNT/Telling Nuclear Truths
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