Scientific Advances in Hemophilia & Brain Functions & Abortion News & Anti-Vax
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Hemophilia Good News
Adults with hemophilia B saw their number of bleeding episodes drop by an average of 71 percent after a single infusion of gene therapy, according to the results of an international Phase III clinical trial published in the New England Journal of Medicine by researchers from the University of Pennsylvania Perelman School of Medicine and a multi-center group of investigators. (U of Penn Med School Report)
Hemophilia is a genetic disorder that limits the blood’s ability to clot and affects around 30,000 people in the United States, mostly males. Left untreated, it can cause spontaneous bleeding, particularly internal bleeding into the joints, which, over time, can cause painful joint damage and mobility issues. Hemophilia B is caused by a lack of clotting factor IX. The gene therapy enables the liver to create factor IX, which allows the blood to clot and protects patients from frequent bleeds.
After at least one year of follow-up, participants in the study had an average 71 percent reduction in bleed rate after receiving the gene therapy, compared to the year prior, when they were treated with prophylactic infusions of factor IX, the standard treatment for the disease. More than half of the 45 patients in the study did not have any bleeds after receiving gene therapy. Based on the results of this study, the FDA approved the gene therapy (fidanacogene elaparvovec) in April 2024.
Hippocampus and Motor Control
Researchers at the University of Birmingham have uncovered a surprising role of the hippocampus – linking this part of the brain to the control of skilled actions such as handwriting, typing, and playing music.
The hippocampus is traditionally associated with memory for events and spatial navigation, but a new study challenges these long-held distinctions and opens new possibilities for rehabilitation of neurological and neuro-degenerative disorders that affect movement.
Publishing their findings in The Journal of Neuroscience, the research team reveal evidence suggesting that the hippocampus plays a role in retrieving and organizing flexible movement sequences from memory.
The research team analyzed functional MRI (fMRI) data to focus on brain activity in key sub-cortical regions as participants performed well-practiced finger sequences from memory on a force-sensitive keyboard, resembling piano playing.
While motor areas in the basal ganglia and the cerebellum – typically associated with the development of "muscle memory" for learned motor skills – showed increased activity during the sequence task, the study uncovered that it was the hippocampus, rather than these motor areas, that held information about the finger order of the sequence a participant was about to perform. This is like predicting whether a person would type “fears” or “fares” from the activity in the hippocampus alone. This knowledge could help develop more effective training programs for neurological rehabilitation of actions, as well as for speeding up the acquisition of new skills.
Personally I was hoping for something that would help me play the piano faster right now. (University of Birmingham)
Abortion Update -Georgia
A Georgia judge on Monday struck down a state law effectively prohibiting abortions beyond six weeks of pregnancy. The ruling, by Judge Robert C.I. McBurney of Fulton County Superior Court, is unlikely to be the final word because of the expectation that the case will ultimately be decided by the Georgia Supreme Court. Still, the ruling means that women seeking abortions in Georgia will have greater access, at least temporarily, to a procedure that has become mostly inaccessible in the South since the U.S. Supreme Court overturned Roe v. Wade in 2022.
Florida Campaign of Intimidation
The Guardian is reporting that police are showing up at the homes of people who signed petitions to put abortion protection into the Florida Constitution. They are “questioning” whether that is the actual signers signature on the petition.
Governor DeSantis initially asked the Florida supreme court to declare the ballot measure unconstitutional on the grounds that its language was vague and misleading. When that ploy failed last April, DeSantis shifted gears: in July a senior official in the state government department in charge of elections announced a review for possible fraud of tens of thousands of petition signatures collected in four counties in support of Amendment 4.
In more recent weeks, the state-run Agency for Health Care Administration (AHCA) has launched a website opposing the initiative on the grounds that it “threatens women’s safety”. It has also spent millions of dollars on television ads urging Florida voters to reject the proposed amendment. I’m not sure that that is a legal use of state funds but we will have to see.
Let’s review. These so called Republicans (who are actually Regressives) want smaller government - except they send the police to people’s homes to intimidate signers of petitions. The want responsible government and budgets but they spend millions of dollars on TV ads opposing legal ballot initiatives. They want government to leave people to be free - Except if you are a woman.
ACTION
Action 1 (Florida)
If you are a registered voter in Florida, VOTE FOR AMENDMENT 4 to make abortion legal there and then vote to send the Regressives packing.
Action 2 (Everywhere)
Click here to send the American Humanist Association letter to your Member of Congress and Senators asking that the Women’s Health Protection Act be put into law restoring the right to an abortion nation wide. Uncheck the contact boxes below your address info if you don’t want to hear from American Humanist.
You can also call/email your elected reps and let them know how important it is to pass the Women’s Health Protection Act. Their contact info is here, https://www.usa.gov/elected-officials.
Anti-Vax Is Anti-Child
Over the past decade, the U.S. has seen a troubling resurgence of vaccine-preventable diseases, including measles, mumps, and most recently, pertussis (whooping cough).
Pertussis, which disproportionately affects infants and young children, was once on the brink of elimination thanks to the widespread use of diphtheria-tetanus-acellular pertussis (DTaP) vaccines, which protect against diphtheria, tetanus, and pertussis. However, recent spikes in whooping cough cases have reignited concerns among public health officials. (MedPage Today)
If there is time on your hands you can read the starting point for much of the distrust of vaccines here on Wikipedia. It is about DISGRACED EX DOCTOR Andrew Wakefield who published false information linking the Measles, Mumps, & Rubella vaccine to autism.
“Wakefield was struck off the UK medical register, in part for his deliberate falsification of research published in The Lancet,[20] and was barred from practicing medicine in the UK.[21] In a related legal decision, a British court held that "[t]here is now no respectable body of opinion which supports [Wakefield's] hypothesis, that MMR vaccine and autism/enterocolitis are causally linked" - footnotes are from the Wikipedia article.
Let me be clear there is a difference between causation and correlation. Here is my favorite example. Since every mass murderer grew up drinking milk - milk should be banned.
Reports show that the percentage of children with vaccine exemptions (non-medical reasons) has also increased to 2.6% in 2022–2023, up from 2.2% the previous year. This rise in exemptions is likely linked misinformation and growing distrust in vaccines.
In the meantime, if there are little ones in your sphere do them a favor and get them vaccinated.
RESOURCES
Find My Elected Officials
Contact State and Federal Representatives - phone and email
Healthcare Advocacy (Us) Website
Our Newsletter resources including reproductive healthcare - Healthcare Advocacy Reading List
Important Healthcare Resources
League of Women Voters Healthcare Reform Toolkit
Organizations to Contact
National Nurses United Medicare4All
Physicians for a National Health Program
One Payer States
Healthcare Now
Reproductive Health
NARAL - Pro Choice America
Charley. chatbot abortion resource - make sure to use a secure incognito browser if you live in a state that has banned abortion
Planned Parenthood
Miscarriage and Abortion Hotline has references about where to procure abortion medications. They also assist women in the process of self managed abortion or miscarriage by phone or text and will respond in an hour. Details and hours of operation at their website.
United State of Women Reproductive health page (bottom of the page) has important resources such as medical support, access to Telehealth, prescriptions by mail, and legal support references.
Practice careful communications - The Digital Defense Fund has a number of tips to keep texts, calls, and internet use private. Here is their site.
If you need financial help with an abortion try abortionfunds.org
Claims Denials and Appeals & What to Do
Appeal a Healthcare Decision
Appeal/Negotiate a Hospital Bill
Disinformation Management
Cybersecurity Infrastructure Security Agency
Save Democracy
Chop Wood, Carry Water by Jessica Cravens
RESISTBOT
Link to the RESISTBOT site to learn more
Link to Chop Wood, Carry Water RESISTBOT write up
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