#CysticFibrosis #mucoviscidose

Demain, c'est la pluridisciplinaire CRCM de mister T.

Pour celleux qui ne connaissent pas, une pluri, c'est la journée à l'hôpital où on fait "le check-up" de l'avancée de la muco : radio des poumons, bilans sanguins, kiné respi, analyse des crachats, psychologue, diététicienne et enfin pneumopediatre.

On enchainera avec la visite des 1mois de baby E. chez la MG.

Autant vous dire que je veux bien vos ondes de courages et d'énergie positive. 🫣

Cystic fibrosis is caused by mutations, or changes, in the #CFTR gene. This gene provides the code that tells the body how to make the #cysticfibrosis transmembrane conductance regulator (CFTR) protein. http://www.genet.sickkids.on.ca/GenomicDnaSequencePage.html

This is likely a very good and important information for people suffering from Cystic Fibrosis and could be something like a “cystic fibrosis cure” or a “cure for cystic fibrosis”, as it seems to be able to at least improve the condition or “reverse it”.

I think one should take this Dr. Artour Rakhimov very seriously, see
https://normalbreathing.com
and see his book
https://www.amazon.com/Cystic-Fibrosis-Life-Expectancy-Childrens-ebook/dp/B00793UMNQ/
All this is based on the extensive research activities by Dr. Buteyko (in the 1960s already) during the soviet space program, aka "hard science" (or "real science", if you will)!

Oh and combining this method with the oil-protein-diet by Dr. Johanna Budwig is most likely extremely recommendable

https://inclinedbedtherapy.com improves lung function.

If you know someone suffering from CF please forward this to him or her, thanks!

#cysticfibrosis
#cysticfibrosiscure
#curecysticfibrosis

Biotech Start-Up to Discover Cystic Fibrosis Therapy

A new #biotechnology company is advancing #research to find a comprehensive #treatment for cystic fibrosis, and staked to a €2 million #seed #investment from its founder.

https://sciencebusiness.technewslit.com/?p=44920

#News #Science #Business #CysticFibrosis #Lungs #Genomics #Mutations #StartUp #Entrepreneurs #France #Inserm #Finance #VentureCapital

Brillliant, comprehensive essay on #cysticfibrosis by Tré LaRosa - what it is, why it's so complex, and what we need to do as a society. #medicine https://trelarosa.substack.com/p/cystic-fibrosis-awareness-month-2023?utm_source=substack&publication_id=20794&post_id=122314997&utm_medium=email&utm_content=share&triggerShare=true&isFreemail=true

#OnThisDay, 5 May 1938, Dorothy Anderson presents her medical research that identified cystic fibrosis at a meeting of the American Pediatric Association.

#WomenInHistory #Histodons #WomenInMedicine #MedicalHistory #CysticFibrosis

Great news for young kids with Cystic Fibrosis aka CF. FDA approves Trikafta use for 2-5 year olds with certain mutations. https://www.cff.org/news/2023-04/trikafta-approval-ages-2-5-mutations #CysticFibrosis #CF #Trikafta

"We have to give people their flowers while they're here": What Tre LaRosa, who has #cysticfibrosis, learned by experiencing the loss of his sister Alyssa to #CF five years ago. https://open.substack.com/pub/trelarosa/p/we-have-to-give-people-their-flowers?r=1e885&utm_campaign=post&utm_medium=email

Important read by @marynmck: We're nearing the catastrophic end of the #antibiotic era. It's time to call in the #phages. #medicine #cysticfibrosis #CFaware https://www.wired.com/story/phages-fight-antibiotic-resistant-bacteria/ https://www.wired.com/story/phages-fight-antibiotic-resistant-bacteria/

Some health conditions exempt from #PrescriptionCharges. The list of conditions created in 1968 doesn’t include #CysticFibrosis because at that time children with the condition did not survive into adulthood. The list hasn’t been revised despite many similar changes.
Please sign this #petition to, hopefully, persuade government to do something useful and correct this historical anomaly.
https://petition.parliament.uk/petitions/633794

My amazing niece - poppypatricia.rt and poppyrobertsart and patriciia_roberts on IG - is selling a picture…
#Art #CF #CysticFibrosis
poppyrobertsart.com

My amazing niece is selling a picture…
#CF #CysticFibrosis #Art

A large number of genetic diseases, such as cystic fibrosis, come about from mutations that cause nonsense sequences to form, often with a termination sequence being created too early in the protein's code.

Rochester University scientists have developed specialized guide RNAs to fix these terminations and also suppress the nonsense-mediated mRNA decay system that turns off the protein coding.

#Medicine #Disease #CysticFibrosis #Genetics #Biotech #mRNA #Science #Scicomm

https://www.cell.com/molecular-cell/fulltext/S1097-2765(23)00029-1#%20

News that sounds like bad news that's actually *great* news: So much progress has been made in extending the lives of people with #cysticfibrosis, a #CF diagnosis no longer automatically qualifies for #MakeAWish. #medicine #health https://www.cnn.com/2023/03/19/us/cystic-fibrosis-make-a-wish-trnd/index.html

This is awesome news! I had a coworker who lost a stepdaughter to #CysticFibrosis in her mid-20s. Awful disease. There's still a lot of progress to make, of course, but it's better than it was!

"Given the ongoing life-changing advances in cystic fibrosis, beginning in January 2024, cystic fibrosis will no longer automatically qualify for a wish."

https://wish.org/cf-update

@mgmarkel @Wolven Trikafta, a lifesaving drug for Cystic Fibrosis patients and produced by Vertex, could also use a cap: https://www.statnews.com/pharmalot/2023/02/20/cystic-fibrosis-drug-costs-copays-vertex #Trikafta #CysticFibrosis #CF #VertexPharmaceuticals #CopayAccumulators

2 #Republican #lawmakers in Idaho have introduced a bill that would make it a #misdemeanor for anyone in the state to administer #mRNA-based vaccines—namely the #lifesaving and remarkably safe #COVID19 #vaccines made by #PfizerBioNTech and #Moderna. If passed as written, it would also #preemptively #ban the use of countless other mRNA #vaccines that are now in development, such as shots for #RSV, a variety of #cancers, #HIV, #flu, Nipah virus, #cysticfibrosis, https://arstechnica.com/science/2023/02/bonkers-republican-bill-in-idaho-would-make-mrna-based-vaccination-a-crime/

Neue Folge! WSR062 MUCPEP: Wirkstoffmodelle für die Mukoviszidose Therapie - Interview mit Dr. Daniel Lauster
von der @freieuniversitaet

https://wirkstoffradio.de/2023/02/19/wsr062-mucpep-wirkstoffmodelle-fuer-die-mukoviszidose-therapie-interview-mit-dr-daniel-lauster/

#COPD #Mukoviszidose #cysticfibrosis

Hello! I'm a speculative #fiction #writer, and #author of the Exponential Apocalypse #dystopian #comedy series 🧟, as well as Beggars Would Ride, a YA #SciFi adventure 👽.

In my day job, I'm a #freelancer writing about #TV, #movies, #VideoGames, and #ComicBooks for Den of Geek, Nerdist, WIRED, and others.

#introduction #SpecFic #NewMexico #coffee #grunge #dogs #CysticFibrosis #CF #ChronicIllness #disability

If you're interested, you can check out my #books here:

https://www.amazon.com/stores/Eirik-Gumeny/author/B003UN5O3W

Are you a person with #cysticfibrosis or a loved one who has a #CF vest that you could donate to someone in another country who doesn't have access to one of these life-saving devices? Please visit: https://www.cfvww.org