INSPIRATIONAL: Amazing but arduous cure for sickle cell disease

Saturday, December 16, 2023

FROM 1440 NEWS

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Sickle Cell Gene Therapy

The US Food and Drug Administration yesterday approved a pair of gene therapy treatments for sickle cell disease, a group of inherited red blood cell disorders caused by mutations in a gene that produces an oxygen-carrying protein known as hemoglobin. One of the treatments, called Casgevy, is based on breakthrough CRISPR technology—a Nobel Prize-winning gene-editing tool (see 101, w/video)—and is the first approved gene-editing therapy in the US.

Codeveloped by Vertex Pharmaceuticals and CRISPR Therapeutics, Casgevy involves harvesting cells from a patient’s bone marrow, editing the cells in a lab using CRISPR technology, and inserting the modified cells back into the patient’s body. Read one man’s account of being among the first people to experience the CRISPR-based treatment here.

The second treatment, developed by Bluebird Bio and called Lyfgenia, uses a harmless virus to introduce a gene into a patient’s body to help produce a hemoglobin substitute. Both Casgevy and Lyfgenia have been approved for people 12 years and older. 

Sickle cell disease (see overview) affects more than 100,000 Americans per year and 20 million people worldwide. 

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https://www.technologyreview.com/2023/12/04/1084209/vertex-exacel-approval-gene-editing-sickle-cell-disease-patient/

OPINION
I received the new gene-editing drug for sickle cell disease. It changed my life.

  • As a patient enrolled in a clinical trial for Vertex’s new exa-cel treatment, I was among the first to experience CRISPR’s transformative effects.

By     Jimi Olaghere
December 4, 2023

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The options for treating sickle cell disease are very limited. Denying access to such a powerful and transformative treatment based on someone’s ability to pay, or where they happen to live, strikes me as unethical. I believe patients and health-care providers everywhere deserve to know that the treatment will be available to those who need it.

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Truly it was an arduous journey.

And, while it may be hard to understand, breakthroughs are expensive.  But as soon as they are made, the inventors and others work on making it available cheaply and easily.  Indoor plumbing, electric light, and automobiles quickly became available to the masses thanks to the “invisible hand” of the marketplace and the incentives af making a profit.

It would be better IMHO for him to focus on the Gooferment and its incestuous relationship with Big Pharma as the barrier to quicker progress.

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INSPIRATIONAL: Search for Mexico’s Ancient Civilizations

Wednesday, December 6, 2023

https://www.smithsonianmag.com/history/zelia-nuttall-globe-trotting-scholar-unlocked-secrets-aztecs-180983049/

History | November 2023

The Globe-Trotting Scholar Who Unlocked the Secrets of the Aztecs

  • Anthropologist Zelia Nuttall transformed the way we think of ancient Mesoamerica
  • An illustration of the Aztec calendar stone surrounds a young portrait of anthropologist Zelia Nuttall. “Mrs. Nuttall’s investigations of the Mexican calendar appear to furnish for the first time a satisfactory key,” wrote one leading scholar.
  • Peabody Museum of Archaeology and Ethnology, Harvard University

By Merilee Grindle
Author, In the Shadow of Quetzalcoatl: Zelia Nuttall and the Search for Mexico’s Ancient Civilizations

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On a bright day early in 1885, Zelia Nuttall was strolling around the ancient ruins of Teotihuacán, the enormous ceremonial site north of Mexico City. Not yet 30, Zelia had a deep interest in the history of Mexico, and now, with her marriage in ruins and her future uncertain, she was on a trip with her mother, Magdalena; her brother George; and her 3-year-old daughter, Nadine, to distract her from her worries.

The site, which covered eight square miles, had once been home to the predecessors of the Aztecs. It included about 2,000 dwellings along with temples, plazas and pyramids where they charted the stars and made offerings to the sun and moon. As Zelia admired the impressive buildings, some shrouded in dirt and vegetation, she reached down and collected a few pieces of pottery from the dusty soil. They were plentiful and easy to find with a few brushes of her hand.

*** end quote ***

Amazing what this woman was able to accomplish.

I was most impressed by her language abilities.

And, I wonder what else we have lost or overlooked.

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INSPIRATIONAL: ₿itcoin podcast slips in a good episode about make bettwe, possibly, Libertarian children

Thursday, October 5, 2023

Kids Don’t Need School with Jonathan Prescott 
Stephan Livera
September 20, 2023

https://overcast.fm/ OBZnLSjGc

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Podcast
Stephan Livera Podcast
http://www.stephanlivera.com

Join Stephan as he interviews the sharpest economic and technical minds in Bitcoin & Austrian Economics to help you understand how money is changing and evolving. This is one of the leading podcasts in the space, and listening to this show is one of the fastest ways to learn and get up to speed on Bitcoin. 

*** end quote ***

This “snuck” in on my favorite ₿itcoin podcast.  I’m sympathetic to home schooling.  Even if I have to children to torture my craziness with. 

This is that “home school” podcast that I thought had some great ideas to try with an ADHD child my fiancé has custody of.  Not to “home school” but to steal some of the strategies and tactics that might help us deal with him. 

It may offer some great ideas.

I was particularly struck by how Gooferment Skrules make the children unable to make even simple decisions by themselves.  I am well aware of the “Prussian School Model” with bells and yak in the box.  It was designed to replace the Family with the State and make cannon fodder for the Army, willing morons for the factories, and useful idiots to vote for and be led by the elite.

FWIW YMMV

I found it inspiration for liberty.

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INSPIRATIONAL: Will the local Gooferment have the stones to have it torn down?

Wednesday, October 4, 2023

https://www.theguardian.com/global/2023/sep/27/london-apartment-block-that-deviates-from-plans-must-be-torn-down-says-council?utm_source=fark&utm_medium=website&utm_content=link&ICID=ref_fark

London apartment block that deviates from plans must be torn down, says council

  • ‘Blight on the landscape’ in Greenwich lacks promised gardens, children’s play areas and accessibility for wheelchair users

Robert Booth Social affairs correspondent
Wed 27 Sep 2023 04.19 EDT
First published on Wed 27 Sep 2023 02.00 EDT

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Buildings rarely look as good as the airbrushed architects’ visualisations produced to persuade planners to grant permission. Extra sharp highlights, implausibly blue skies and deeper colours are all part of the dark arts of the computer-generated rendering.

But the gulf between what was proposed for an apartment complex rising 23 storeys above the Thames in south-east London and what was actually built has finally proved too much.

After counting 26 major deviations from the original planning permission that it granted, the Royal Borough of Greenwich has taken the extraordinary move – “unprecedented”, it said – of ordering the developers of the Mast Quay II development to pull it down. It means tenants in 204 flats now face the prospect of finding somewhere else to live.

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Well clearly the correct politicians and bureaucrats didn’t have their pockets lined right!

Now will the politicians and bureaucrats have the courage to have it torn down?

Seems like a waste, but if they don’t, it sends the wrong message.  I can imagine the lawsuits and pity parties that will ensue.

Perhaps if the “profit” and then a little extra is removed from all involved, a more economic result MIGHT be achieved.  But only if all involved are equally screwed.

Seems a waste of prefectly good building to send a message to the “marketplace”.

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INSPIRATIONAL: Even “casual caring’ can be enough to help in a terrible situtation

Saturday, September 30, 2023

https://www.goodnewsnetwork.org/she-was-about-to-end-it-all-until-a-stranger-shed-never-meet-again-told-her-dont-jump/?utm_campaign=newsletters&utm_medium=weekly_mailout&utm_source=21-09-2023

She Was About to End it All, Until a Stranger She’d Never Meet Told Her ‘Don’t Jump’
By Andy Corbley – Sep 18, 2023 

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“I was sobbing and crying and working up the courage to just go through with it, because I knew at that moment that it was going to make everyone’s lives better.”

At that moment, a driver, whose face Belmont didn’t see, and whose hand she would never shake, passed over the bridge and hollered out of the window.

“Don’t jump,” they said.

It immediately clicked a lightbulb on in her head; that if a stranger could care enough to speak up, then suicide was not the answer.

*** end quote ***

Help is available call or text 988.

I’d have preferred if the driver stopped and talked her “down”.  But, maybe that would have had a worse effect?

I always thought that suicide for a young healthy persons was just FEAR (i.e., False Evidence Appearing Real).  And, the Bible tells us, as one Christian Brother to my class, that “leaving the game early is against the rules.  That’s why football has the ‘Hail Mary Pass.  There’s always hope.  Or in the case of the opponents of Notre Dame, the next game!”.  Maybe a little sacrilegious, but in a funny memorable way.  We all have to just put one foot in from to the other, day by day, until we reach the finish line.

I wrote in my Magnus Opus: “My love, were it in my power, I would sadly grant thee this boon. But, we have to continue to follow His Plan for us. Let’s go forth and speak no more of this. Who ever is last will be last. It will be His choice; not ours. We’re but humble custodians of His temple on earth. It’s not our place to trump His plan. Whatever that plan be, know that I will be with you to my last breath.” — character “John” in CHURCH 10●19●62 Volume 2 Page 399

And, I really believe that to be true.

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INSPIRATIONAL: Making lenonaid from lemons

Wednesday, September 27, 2023

https://nypost.com/2023/09/21/my-90-minute-american-airlines-flight-turned-into-9-hour-hell/

 My 90-minute American Airlines flight turned into a 9-hour hell — but a miracle happened

By Jane Herz 

Published Sep. 21, 2023, 9:27 a.m. ET

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American Airlines flight 5085 was scheduled to depart at 4:30 p.m. on Sept. 18. But when Conley looked at his phone and saw that the time was 6:30 p.m. — about a half hour after the plane was originally supposed to land at Dallas Fort Worth International Airport (DFW) — he knew something was awry.

That’s when the pilot told passengers that the plane was diverted to a small airport in Wichita Falls, Texas, due to a severe impending storm, as DFW was not allowing landings or takeoffs.

Rather than disembarking upon landing at 6:45 p.m. at Wichita Falls Regional Airport, Conley and his fellow passengers got stuck on the tarmac for over two hours because airport employees weren’t allowed outside due to the lightning.

But what should have been the flight from hell was really something that turned into a beautiful, human experience, Conley, 38, said.

*** and ***

The man Conley was sitting next to, Joshua Chandler, even put on a pretend duck tour for the young kids, as he had been on one earlier that day, blowing the yellow duck whistle around his neck.

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What a great inspirational story.  We hear all about the “Karens” and “Kens”, drunken idiots, or some “un housebroken” slobs on planes.  But we rarely hear of the times that humans all come together under duress and make the best of some unfortunate coincidences.

I’d like to think that I could be like them  — charitable, kind, and considerate of my neighbors.

And, BTW, where does one go for a “duck tour” and why. Laugh!

Of course, I’ll never ever fly into, out of, or through DFW.  One thunderstorm ride there back in the 70’s was enough for me. (And that’s where IBM lost its PC team when Esteridge’s place went down. All the corporate travel departments created the “only a few employees on any one flight” rule as few weeks later. So sad.)

Great story of humanity’s possibilities.

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INSPIRATIONAL: Usign “e-waste” to revive an electric scooter

Friday, September 8, 2023

https://www.goodnewsnetwork.org/man-used-80-discarded-vape-batteries-to-power-an-electric-scooter-proving-the-importance-of-e-waste/?utm_campaign=newsletters&utm_medium=weekly_mailout&utm_source=05-09-2023

Man Used 80 Discarded Vape Batteries to Power an Electric Scooter Proving the Importance of E-Waste

By Good News Network – Sep 2, 2023 

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A clever graduate has used 80 discarded vape batteries to power his e-scooter—and to make a point about waste.

The 23-year-old Brit says disposable vape devices are marketed as expendable, but still have plenty of power—and people need to know that.

It didn’t cost any money to pick up 80 discarded vape batteries and he wired the lithium-ion batteries to a scooter purchased on eBay for $37 (£30).

*** end quote ***

Wow.  Now there’s an “injineer”.  

I’m more impressed with scooters when I see them in use.  While I’m too old and heavy for one, and they really are only for “fair weather”, there is a lesson for “youngsters” who can’t drive yet that there are alternatives to “shank’s mare” aka walking.

It also demonstrates the value of “lateral thinking”.  

Wish I was young again, there seems like there are MORE opportunities for youths to succeed in unconventional 9-5 wage slave jobs.

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INSPIRATIONAL: One man’s effort leads to reestablishing a species

Wednesday, August 30, 2023

https://www.goodnewsnetwork.org/to-halt-ibis-extinction-austrian-man-shows-beloved-birds-a-new-migration-route-with-his-ultralight-and-its-working/?utm_campaign=newsletters&utm_medium=weekly_mailout&utm_source=24-08-2023

To Halt Ibis Extinction Austrian Man Shows Birds a New Migration Route With His UltraLight–And it’s Working

By Andy Corbley – Aug 21, 2023

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An Austrian ornithologist has pioneered an incredible way of wildlife rehabilitation by fostering chicks of an endangered species before re-instituting their migratory practice by leading them along their natural migration route with an ultralight aircraft.

The method was developed to help reconnect the northern bald ibis, a bird that was extirpated in Europe 400 years ago, with its summer-winter migration pattern from northern Europe to its sunny southern climes.

*** and ***

Fritz came to the rescue again, hand-rearing chicks on ground mice and beef heart 8 times a day, while letting the inquisitive, gregarious chicks investigate his ears and nose for curiosity’s sake.

This was all a part of getting them to the age of flight when he would lead them again in his ultralight aircraft along a 2,500-mile circumnavigation of the Alps to a new wintering site on the sunny Spanish south near Cadiz

*** end quote ***

A heroic effort.

And just goes to show when one committed “crazy” person can accomplish.

That’s conserving nature for future generations.

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INNOVATION: Oubaitori: Avoiding Comparison to Others

Sunday, July 23, 2023

https://www.artofmanliness.com/character/advice/7-japanese-concepts-that-can-improve-your-life/

in: Advice, Character
Brett & Kate McKay • July 18, 2023
7 Japanese Concepts That Can Improve Your Life

*** begin quote ***

Oubaitori: Avoiding Comparison to Others

The characters that spell out oubaitori represent four different trees that bloom in Japan in the spring: cherry, apricot, peach, and plum. Each tree blooms in its own way and in its own time, and each bears a distinct flower and fruit. Oubaitori as a concept grows out of this arboreal image and refers to the idea of avoiding the habit of comparing yourself to others and embracing your unique journey and timeline instead. 

Theodore Roosevelt (another appreciator of Japanese culture) famously said, “Comparison is the thief of joy.” Boy, was he right. I’ve noticed that I tend to get most down in the dumps when I start measuring my success against the success of others. Whenever I start doing that, I just remind myself to practice oubaitori. The word serves as a trigger to shift my focus away from others and back to my own path.

*** end quote ***

Hmmm, my own path?  I’m not sure I have one.  Or, ever had one.  More like adrift on raft at sea.

Sigh!

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INSPIRATIONAL: Marine Mammal Stranding Center returns Harbor seal #23-089 to the ocean

Sunday, July 16, 2023

https://youtu.be/NXdeZfafu5M

MMSC Harbor seal #23-089 Release Day- July 13, 2023
Marine Mammal Stranding Center
Jul 14, 2023

*** begin quote ***

Our final seal release of the 2022-2023 season was a BIG one with the return of Harbor seal #23-089 (Barnegat Light) back to the wild! This adult female Harbor seal spent over six weeks recovering from an injury in MMSC’s rehabilitation hospital. Safe travels, big girl!

*** end quote ***

Awe inspring.  When humans act ethically to animals.

Happy to support their activities.

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