Yesterday, Crooks & Liars (probably along with every other news outlet, paper or on line, TV and all kinds of video) published some details of Noelle Dunphy’s lawsuit against Rudy Giuliani. It definitely needs a barf bag warning. She does have receipts too. If only there were a way to know exactly what is missing from these Republicans (and somehow put it into them) that they think they can do anything imaginable (or unimaginable to normal people) with absolutely no consequences whatsoever. Sigh. In the short takes, I am sharing two articles about Jordan Neely, because they are so different in their outlook and details. This was not a case of a bad cop, but I’m not inclined to expect much if any accountability – certainly not without a lot of protesting demanding it.
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New York Magazine “The Cut” – The Cost of White Discomfort
Quote – In the wake of Jordan’s murder, Kenneth Jones’s and Tema Okun’s definition of the “right to comfort” haunts me: “The belief that those with power have a right to emotional and psychological comfort … I have a right to be comfortable, and if I am not, then someone else is to blame.” When Daniel Penny was not comfortable on the F train, he single-handedly decided that Jordan was to blame. Click through for article. This rage is justified. Is any other white person as humiliated as I am that people with our skin tone are so fragile as to kill out of discomfort – and so privileged to get away with it? White Americans who whine about the excessive privilege of the British royal family need to look in a mirror and see their own. (But they won’t. That would be uncomfortable.)
The New Yorker – The System That Failed Jordan Neely
Quote – There are more than two hundred thousand residents of New York City living with severe mental illness; roughly five per cent of them are homeless. That’s thirteen thousand people with schizophrenia, major depressive and bipolar disorders, or other significant mental- or behavioral-health diagnoses, all of whom regularly spend the night at a shelter, in the subway, on the street. They’re the ones you recognize—the people whom, for the past fifty years, every mayor has either tried to help, harass, or hide from view. Rudy Giuliani’s cops were known to chase people out of midtown, forcing them into the Bronx and Queens. Michael Bloomberg largely avoided public initiatives that addressed mental illness. Bill de Blasio allocated almost a billion dollars for a mental-health plan, but it was criticized for failing to track outcomes or prioritize treatment for those who needed help the most. Click through for details. What we had before Ronald Reagan became Governor of California (and then President) was far from perfect, but it was better than this. Constantly reading about people, many in disadvantaged groups besides being mentally ill, killed publicly with no consequences – particularly since the disadvantage is often the cause of the illness (e.g. lead in drinking water) and is itself the result of apathy or malice on the part of the demographic doing most of the killing. It’s like beating someone up, and then killing them because their bruises make us uncomfortable.
The 19th – Meet the women working to grow local food systems on U.S. island territories
Quote – Through working on their presentation, the students learned of a national initiative … called the National Farm to School Network, and it’s a nonprofit organization that works to connect local farms with school cafeterias — a model that both bolsters local food systems and provides healthier school lunches for kids — a win-win for farmers and their communities. But the network didn’t reach the U.S. Virgin Islands, and [teacher Sommer] Sibilly-Brown remembers one of her students asking: If the program was national, why didn’t it reach their territory? “That question has been the question that has driven my work,” Sibilly-Brown said. “If we are the United States, why not here?” Click through for story. Good for them. But this is another huge reason why our territories should be granted statehood. Far too much of the country thinks residents there are “not American.” And that just isn’t right.
In The Public Interest – Should we talk about the government?
Quote – I would also argue that some of the criticism of government—from the left and right–makes it harder for it to do the things that can only be accomplished if we do them together– through public action. In my book, The Privatization of Everything, I argue that, while people are understandably skeptical of “government,” many of the things Americans don’t like about government actually stem from too much corporate influence in politics. It’s important we continue to make that distinction clear. Click through for full discussion. In a free and democratic society, the government is all of us. So, yes, we should talk about it. If you don’t provide cnstructive input, you really have no right to complain when you don’t like the result.
Yesterday, I had a chance to read the story from Friday about charges having been dropped against Courtney and Nicole Mallery, the black ranchers in the county I live in who were charged with – something – essentially for being the victims of deliberate and premeditated harassment. It took too long, but it has finally happened. I thought y’all would want to know.
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Daily Beast – The Texas Mall Shooter’s Radicalization Is No Surprise
Quote – This past Saturday, May 6, a gunman opened fire outside of a mall in Texas, slaughtering eight people, including children. (The shooter was killed by police at the scene.) The sheer brutality of this massacre was captured profoundly in the statement of a witness who tried to find a pulse on a little girl—only to turn her over and reveal that she had no face. This time the shooter wasn’t white. He was a 33-year-old man of Hispanic heritage, which immediately allowed some far-right pundits to play off any suspicions that this might again be related to white supremacist rhetoric. But as should be obvious by now, white supremacy can be upheld by non-white people (just as white nationalists can be superfans of someone who practices Orthodox Judaism, like Ben Shapiro). Click through for full opinion. He goes back to 2017 (Canada) and examines the phenomenon of non-white white nationalists. The line between delusion and self-hatred is evidently perilously thin.
Southern Poverty Law Center – Buffalo Massacre: A Year Later, White Supremacist Propaganda Continues to Spur Violence
Quote – The “great replacement” theory is a central tenet of white nationalism. Steeped in racist and antisemitic narratives, it falsely asserts there is a concerted and covert effort to replace white populations in white-majority countries with immigrants of color. The conspiracy theory has inspired many other attacks carried out by white extremists against people of color, immigrants, Jewish people and Muslims. Once a fringe idea propagated by hate groups and other extremists – frequently in online message boards – the “great replacement” theory and ideas akin to it have been normalized and dragged into the mainstream, in part, with the help of conservative political figures, media personalities, lawmakers and lobbying groups. Clicl through for retrospective. To paraphrase Chesterton, sometimes it isn’t news we need so much as to be reminded.
Experts in autocracies have pointed out that it is, unfortunately, easy to slip into normalizing the tyrant, hence it is important to hang on to outrage. These incidents which seem to call for the efforts of the Greek Furies (Erinyes) to come and deal with them will, I hope, help with that. As a reminder, though no one really knows how many there were supposed to be, the three names we have are Alecto, Megaera, and Tisiphone. These roughly translate as “unceasing,” “grudging,” and “vengeful destruction.”
Between an effective antibody for all the CoViDs (SARS-2) – mentioned in a short take today – and the promises of gene therapy, it’s been an impressive week. Yes, I realize I’ve put up a lot of good news/potentially good news today – but hey, it’s Mother’s Day.
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Gene therapy helps combat some forms of blindness – and ongoing clinical trials are looking to extend these treatments to other diseases
New gene therapies are helping to treat certain forms of inherited blindness. GettyImages
An estimated 295 million people suffer from visual impairment globally. Around 43 million of those people are living with blindness. While not every form of blindness can be cured, recent scientific breakthroughs have uncovered new ways to treat some forms of inherited blindness through gene therapy.
Jean Bennett is a gene therapy expert and a professor emeritus of ophthalmology at the University of Pennsylvania. She and her laboratory developed the first gene therapy drug for a genetic disease to be approved in the U.S. The drug, Luxturna, treats patients with biallelic RPE65 mutation-associated retinal dystrophy, a rare genetic disorder that causes visual impairments and blindness in patients early in life.
In March, Bennett spoke at the 2023 Imagine Solutions Conference in Naples, Florida, about what gene therapy is, why it matters and the success she and her team have had helping the blind to see. The Conversation caught up with Bennett after the conference. Her edited answers are below.
Jean Bennett speaks at the 2023 Imagine Solutions Conference.
What is gene therapy and how does it work?
Gene therapy is a set of techniques that harness DNA or RNA to treat or prevent disease. Gene therapy treats disease in three primary ways: by substituting a disease-causing gene with a healthy new or modified copy of that gene; turning genes on or off; and injecting a new or modified gene into the body.
How has gene therapy changed how doctors treat genetic eye diseases and blindness?
In the past, many doctors did not think it necessary to identify the genetic basis of eye disease because treatment was not yet available. However, a few specialists, including me and my collaborators, identified these defects in our research, convinced that someday treatment would be made possible. Over time, we were able to create a treatment designed for individuals with particular gene defects that lead to congenital blindness.
Gene therapy treatments are now available in pharmacies and operating rooms all over the world.
Gene therapy is even being used to restore vision to people whose photoreceptors – the cells in the retina that respond to light – have completely degenerated. This approach uses optogenetic therapy, which aims to revive those degenerated photoreceptors by adding light-sensing molecules to cells, thereby drastically improving a person’s vision.
You created one of the first gene therapies approved in the US. What is the current state of the clinical use of gene therapy?
There are now many approved gene therapies in the U.S., but the majority are combined with cell therapies in which a cell is modified in a dish and then injected back into the patient.
Many forms of gene therapy are helping to treat blindness. GettyImages
The majority of those therapies target different forms of cancer, although there are several for devastating inherited diseases. The drug Skysona is a new injectable gene therapy medication that treats boys ages 4 to 17 with cerebral adrenoleukodystrophy, a genetic disease in which a buildup of very-long-chain fatty acids in the brain can lead to death.
The gene therapy that my team and I developed was the first FDA-approved project involving injection of a gene therapy directly into a person – in this case, into the retina. Only one other FDA-approved gene therapy is directly administered to the body – one that targets spinal muscular atrophy, a disease that causes progressive muscle weakness and eventually death. The drug, Zolgensma, is injected intravenously into babies and children diagnosed with the disease, allowing them to live as healthy, active children.
There are now more than two dozen FDA-approved cell and gene therapies, including CAR T-cell therapies – in which T cells, a type of immune system cells, are modified in the laboratory to better attack cancer cells in the body – and therapies for various blood diseases.
What are you currently working on that you’re most excited about?
I am very excited about some upcoming clinical trials that my team will soon initiate to target some other devastating blinding diseases. We will incorporate a new test of functional vision – how your eyes, brain and the visual pathways between them work together to help a person move in the world. This test utilizes a virtual reality game that is not only fun for the user but promises to provide an objective measure of the person’s functional vision. I hope that our virtual reality test will inform us of any potential benefits from the treatments and also serve as a useful outcome measure for other gene and cell therapy clinical trials involving vision.
What are the biggest challenges gene therapy faces?
The biggest challenges involve systemic diseases, or diseases affecting the entire body rather than a single organ or body part. For those diseases, super-high doses of gene therapy reagents must be delivered. Such diseases involve not only technical challenges – such as how to manufacture enormous amounts of gene therapy compounds without contaminating them – but also difficulties ensuring that the treatment targets diseased tissues without causing toxic immune side effects. That level of a problem does not exist with the eye, where relatively small doses are used and exposure to the rest of the body is limited.
Another challenge is how to address diseases in which the target gene is very large. Current approaches to delivering treatments into cells lack the capacity to hold large genes.
Cost remains a key issue in this effort – gene therapy drugs are enormously expensive. As drug manufacturers are able to refine this technique, gene therapy drugs may become more commonplace, causing their price to drop as a result.
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AMT, this news carries a lot of potential. Some of it will probably not work as expected and hoped. But even if only a few of the possibilities pan out, the results could be amazing. I’m thinking today of the pain mothers of children with some kind of genetic problem have had to suffer ocer the millennia, and hoping that may someday be a thing of the past.
Yesterday, the radio opera was Verdi’s “Aïda.” It was commissioned by the Egyptian government of the time to celebrate the opening of the Suez Canal. IIRC, it was a bit on the late side, but it was a hit anyway (which suggests that Egyptians of the day didn’t know their history much more accurately than we know ours today.) I got to thinking about how tastes can change over time. A hundred years ago, Gounod’s “Faust” was so popular, and therefore performed so often, that one critic nicknamed the Met “Das Faustspielhaus” – a pun on Wagner’s “Festspielhaus” at Bayreuth (a story in its own right). Both Aïda and Boheme existed (1874 and 1895 respectively), but they weren’t all that popular. Fifty years ago, the three most performed operas at the Met were Aïda, Boheme, and Carmen, in that order. The ABCs of opera. Today, Boheme is the most performed, followed by Aïda, and there may not be a clear third. This is not a bad thing. If tastes didn’t change, new operas would not have a chance of success. But I digress. Aïda is a love trianglein which all three apexes are doomed. Aïda is a POW from the last war between Egypt and Ethiopia, and has been given to Amneris, the Pharaoh’s daughter as a slave. Both are (secretly) in love with Radames, a general in the Egyptian army. Egypt receives intelligence that Ethiopia is planning to attack them, and decides to hit Ethiopia back first.Radames is chosen to command the attack. Egypt wins and Radames brings home prisoners, including Aïda’s father. There is a huge triumphal scene, notorious for the number and variety of animals on stage, inclidng a march which is so famous and so often played on its own that you have probably heard it. The Pharaoh rewards Radames for his success by giving him Amneris’s hand in marriage (not exactly what he was hoping for.) Radames and Aïda consider running away to escape this fate, but her father shows up at their meeting place before Radames does, and puts the screws to her to get Radames to tell her the Egyptian battle plan. Unwillingly, she does so, and at that moment Amneris and the High Priest show up and condemn Radames as a traitor. There’s an off stage trial, Radames does not defend himself and is condemned to be locked into a tomb (and asphyxiated.) Aïda sneaks into the tomb first and they die together while Amneris prays for peace for her soul. Aïda’s music in the final scene is written in such a way that musicologists have suggested it demonstrates she has been waiting for him in the tomb long enough to already be noticeably low on oxygen, and I think they are on to something. Totally unrelated: I bombed the Conversation’s quiz this week – only 4 correct out of eight. Told you I couldn’t keep it up. 🙂
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The Brighter Side – Breakthrough antibody kills all known variants of SARS-CoV-2
Quote – Researchers from Harvard Medical School and Boston Children’s Hospital have made a significant breakthrough with the development of a new antibody. This antibody, during laboratory examinations, effectively neutralized all presently recognized variants of SARS-CoV-2, which includes all known variants of Omicron. Click through for some medical detail. However, this is not a journal, so it’s pretty well simplified.
Crooks & Liars – Shocker: NYT Headline Admits Biden Didn’t Do Anything Wrong
Quote – And in a rare turn of events, the NY Times ran this story with a completely unambiguous headline: “House Republican Report Finds No Evidence of Wrongdoing by President Biden.” Man bites dog! It’s a low bar, but I’ll take it. Click through for a bit more. This is good news, but it’s still sad when an accurate headline is itself newsworthy for its accuracy alone.
