28 February is
Rare Disease Day
'Raising awareness and generating change for the 300 million people worldwide living with a rare disease, their families and carers.'
Manchester, UK https://www.rarediseaseday.org/event/light-up-for-rare-2/
Continued ... https://www.rarediseaseday.org/
'Teleological ideas generally have a rather bad reputation in science, and it's easy to see why. In biology, a teleological explanation for the emergence of complex creatures would be tantamount to an argument for the existence of a designer, whereas Darwin's theory of evolution by natural selection provides a simpler explanation that fits the available data beautifully. There is no teleological component to Darwin's theory - random mutations produce variations in organisms, and external pressures from the environment and other living thing determine which of these variations are passed on to the next generation. This process alone can account for the complexity we see in life on Earth today. In other words, there is no need for a grand plan and no gradual ascent of life towards some sort of perfection. Instead, the evolution of life is a random walk, generated by the imperfect copying of genes in a constantly shifting external environment. The Nobel-Prize-winning French biologist Jacques Monod went so far as to define a cornerstone of modern biology as "the systematic or axiomatic denial that scientific knowledge can be obtained on the basis of theories that involve, explicitly or not, a teleological principle".
As far as physics is concerned, there is no debate as to whether or not the least action principle actually works, for it allows calculations to be performed that correctly describe Nature and it is a cornerstone of physics. It can be argued that the least action principle is not teleological at all, but the debate is in any case neutralized once we have a grasp of Feynman's approach to quantum mechanics. The ball flying through the air 'knows' which path to choose because it actually, secretly, explores every possible path.' pp.52-53.
Cox, Brian, and Jeff Forshaw. (2012) Quantum Universe, the: Everything That Can Happen Does Happen. London: Penguin Books Ltd.
See also:
Jacques Monod - https://www.informationphilosopher.com/solutions/scientists/monod/
Harrison, Peter. 2022. 'The History of Science and Theology', St Andrews Encyclopaedia of Theology. Edited by Brendan N. Wolfe et al. https://www.saet.ac.uk/Christianity/TheHistoryofScienceandTheology
Abstract
'The exciting field of human social genomics provides an evolutionarily informed, multilevel framework for understanding how positive and negative social–environmental experiences affect the genome to impact lifelong health, well-being, behavior, and longevity. In this review, we first summarize common patterns of socially influenced changes in the expression of pro-inflammatory and antiviral immune response genes (e.g., the Conserved Transcriptional Response to Adversity), and the multilevel psychological, neural, and cell signaling pathways by which social factors regulate human gene expression. Second, we examine how these effects are moderated by genetic polymorphisms and the specific types of social–environmental experiences that most strongly affect gene expression and health. Third, we identify positive psychosocial experiences and interventions that have been found to impact gene expression. Finally, we discuss promising opportunities for future research on this topic and how health care providers can use this information to improve patient health and well-being.'
Slavich GM, Mengelkoch S, Cole SW. Human social genomics: Concepts, mechanisms, and implications for health. Lifestyle Med. 2023; 4:e75. https://doi.org/10.1002/lim2.75
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| Lifestyle Medicine |
Genomics | |
Social Genomics |
Henrietta | 'immortal cells' |
| Lacks |
No consent No family knowledge Harm to trust of African American communities Damage to trust in medical research generally |
Thanks to Ilaria Galasso, for reminding me about HeLa cells - Henrietta Lacks in a presentation at:
https://vitalcirculations.org/
15:00-15:30 Genetic data and the collective good: participants as
leaders to reconcile individual and public interest | Ilaria Galasso
https://www.eventbrite.co.uk/e/vital-circulations-vital-data-symposium-tickets-365908681717
My source:
https://twitter.com/JeroticStefan/status/1508898715473530888?s=20&t=X61DSrPzEyLvX-FhzY5r-A
Need for bio-psycho-socio-POLITICAL perspectives - spiritual too.
Previously on W2tQ: DSM
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"Learning from the rare disease community
Europe’s pharmaceutical entrepreneurs are taking the lessons learned from this community to develop health innovation which would not have been dreamt of a few decades ago."
Yes, they do!
The sciences (all of them) are a vital domain, but as ever of course we must not let this limit the scope of our collective aspirations when it comes to rare diseases and innovation.
We need to take into account the four domains of Hodges' model plus the spiritual as we address local and global health with rare diseases and disability an intrinsic part of health systems and services whether in delivery or development.
In this way we also acknowledge the role of the social determinants of health and the SDGs.
Image:
https://twitter.com/Parlimag/status/1497156923610836995?s=20&t=dvO5GlugrN185L3Z98k5PA
Previously:
'disease'
https://hodges-model.blogspot.com/search?q=disease
'rare'
'domain'
https://hodges-model.blogspot.com/search?q=domain
Dear CHAIN member,
We would like to draw your attention to the following funding opportunity. Please pass on as appropriate. Thank you.
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My source:
CHAIN - Contact, Help, Advice and Information Network – is an online international network for people working in health and social care. For more information on CHAIN and joining the network please visit website: www.chain-network.org.uk
@CHAIN_Network
Communication, speech self expression personhood identity memory personality mood Extend meaningful quality of life |
Age 40 most people with Down syndrome develop beta amyloid plaques in the brain — a key characteristic of Alzheimer’s disease. Scientists believe this is because they have an extra copy of chromosome 21, which carries an amyloid-producing gene.Major international research effort, (ages 25+) plus siblings over five years. Multisite Alzheimer’s Biomarkers Consortium — Down Syndrome (ABC-DS) study Biomarkers, genetic background, environmental, metabolic and other physiological factors |
Intergenerational angst if parent/family member a primary carer? Help families prepare for what’s going to happen potentially with their loved one |
Funded by a $109 million grant from the National Institutes of Health |
My source:
Tracking the #Alzheimers-#DownSyndrome connection https://t.co/rVgyhio2LI#dementia #science @BonniBK @BlueTeamGA @NJdoc @MaryHNJ @kenjaques @tammymay1985 @chladek_david @DenzilMclaren @FromGreenhills @monibhachu @HJAhere @h2cm @RoseGold177 @WaterWorxUK @louisebrady17 @avecozave pic.twitter.com/CzqpnaPooZ
— Ian Kremer (@LEAD_Coalition) April 12, 2021
Learn more about the study at mind.uci.edu/adrc/about
"Scientists have theorised why DNA curls to the right. A study at New York University has found that when cosmic rays hit the atmosphere, they produce a cascade of cosmic particles. Among these are muons, which have a magnetic polarisation, which causes more right handed mutations, according to a paper in Astrophysical Journal Letters."
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| Individual: general literacy health literacy economic literacy ... ... Individual: morality, values, integrity ... | "South Africa's Northern Cape is one of the most ethnographically unique locations on Earth. It is home to the San people, a nomadic hunter-gatherer group that carries some of the oldest human DNA." p.90. |
The SAN people "Our knowledge has been taken by clever people who come and tempt us - | TRUST Project 'National' ethics standards - with 10 rand or five rand." p.90. |
Inherited Fear "Scared - but not named." The ghost of a ghost or the memory of a | Biology Germ cells Neuro-epigenetics PAG or periaqueductal gray - the primary control centre for pain modulation Know your surroundings Facial recognition |
| shadow Transmission of trauma across generations Who is Who | All around the World War, Perpetual Conflict Ethnic cleansing Refugees Climate migrants ... The Past The Present The Future |
... but Rare Diseases will still be affecting people tomorrow...
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Dear ERCIM News Reader,
ERCIM News No. 104 has just been published at http://ercim-news.ercim.eu/en104
Published today [UK ]
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| Mapping It Out |
| Y I tell you what you will believe and IF you can have an education! | X Wither women in science and engineering? |
| X Whose place is this? 'Who' is the community?
#BringOurGirlsBack
| Y Human Rights for Girls and Boys |
I am honored to stand, in her graceful place, and shine a light on a delicate group of individuals who, nevertheless, in sheer numbers are a force to be reckoned with. Thank you, Sean Hepburn Ferrer | A disease or disorder is defined as rare in Europe when it affects fewer than 1 in 2000. A disease or disorder is defined as rare in the USA when it affects fewer than 200,000 Americans at any given time. One rare disease may affect only a handful of patients in the EU (European Union), and another touch as many as 245,000. In the EU, as many as 30 million people alone may be affected by one of over 6000 rare diseases existing.
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| In the words of Audrey Hepburn, “We cannot save everyone… but the knowledge that someone is coming to their rescue… that we care as a society is ultimately as important…”. |
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| Brian E. Hodges - c/o Brian's family. |
Born in Liverpool, NW England, UK.
Community Mental Health Nurse NHS, Part-time Lecturer,
Researcher Nursing & Technology Enhanced Learning
Registered Nurse - Mental Health & General
Community Psychiatric Nursing (Cert.) MMU
PG Cert. Ed.
BA(Joint Hons.) Computing and Philosophy - BIHE - Bolton
PG(Dip.) Collaboration on Psychosocial Education [COPE] Univ. Man.
MRES. e-Research and Technology Enhanced Learning, Lancaster Univ.
Live and work in NW England - seeking a global perspective.
The views expressed on W2tQ are entirely my own, unless stated otherwise.
Comments are disabled.
If you would like to get in touch please e-mail me at
h2cmng AT yahoo.co.uk
orcid.org/0000-0002-0192-8965
