Posts by Xeniax@mastodon.ml
(DIR) Post #B0mLFRlWfeSEZWbGJk by Xeniax@mastodon.ml
2025-11-30T17:57:14Z
0 likes, 0 repeats
@benjohn thank you! Thats precious
(DIR) Post #B0mM0WWum6BYxVDJIm by Xeniax@mastodon.ml
2025-11-30T18:05:45Z
0 likes, 0 repeats
@pdufour Merci beaucoup pour l'article Patrick. Je sais que Synacthene est devenu difficile voire impossible à trouver en Europe, pas qu'en France. Le problème avec cette formulation de ne le prescrire qu'en cas jugés prioritaires est que cela devient une raison pour les neuropédiatres d'arrêter de le prescrire alors qu'il est très efficace là où les autres traitements échouent. Les neuropédiares commencent à prescrire que de l'hydrocortisone qui est plus accessible mais peu efficace. C'est un serpent qui se mord la queue. C'est pour cela qu'il faut rendre le synacthene plus facilement accessible...
(DIR) Post #B0mbIcMlJTIfaIYDSq by Xeniax@mastodon.ml
2025-11-30T20:57:06Z
0 likes, 0 repeats
@VulcanTourist agree... I am so sorry you and your wife had this experience.
(DIR) Post #B0nsUDVlRPgQLuq1c8 by Xeniax@mastodon.ml
2025-12-01T11:44:22Z
0 likes, 0 repeats
@GoGhostly I will try to ask our neuropediatrician, but she is so hard to get! Hyper busy and also not willing to discuss research side of things...
(DIR) Post #B0nsVvR9c0yksJUq92 by Xeniax@mastodon.ml
2025-12-01T11:44:43Z
0 likes, 0 repeats
@Kierkegaanks exactly. But this disruption is not explained
(DIR) Post #B0nz4a8pNcRWgjpiWO by Xeniax@mastodon.ml
2025-12-01T12:58:11Z
0 likes, 0 repeats
@LightFIAR thanks! My daughter is stable now. I am doing this for other kids with same diagnosis. Cannabidiol is great. Indeed! But it takes more time until it shows efficiency. With this syndrome every day of seizures counts...
(DIR) Post #B0o0nEF9k6Evl5e8MS by Xeniax@mastodon.ml
2025-12-01T13:17:27Z
0 likes, 0 repeats
Cher.es ami.es francophones. Après investigation, un nom m'a ete conseillé, celui de Rozenn Le Saint, journaliste specialisée en santé. Son profil est vraiment au top. Est-ce que parmi vous certain.es la connaissent ? Une introduction personnelle serait mieux que si je la contacte "à froid". Merci !
(DIR) Post #B0ohhrE4Bq7Sx4p1DE by Xeniax@mastodon.ml
2025-12-01T21:18:19Z
0 likes, 0 repeats
@LightFIAR thank you! We will fight for that!
(DIR) Post #B0z1xJJzxE7163qFHM by Xeniax@mastodon.ml
2025-12-06T20:51:59Z
0 likes, 0 repeats
Hey dear Fedi friends. A quick follow-up on that post about shortage of medication that saves kids suffering from #West_Syndrome. I managed to find a very kind person from Finland who has defended a PhD on drug shortages. We had a video call and he wants to help understand what happened with Synacthene retard and how to get it back to pharmacies. He will help contact the lab that used to produce the drug and also contact other labs across Europe to see which one still manufactures this drug. We have a plan! But we still need a journalist who can make this story known and visible to a bigger audience. Do not hesitate if you know someone who could help us write an article. This case has everything a good story should have: real voices of a marginalized group, first-hand expériences, background corruption schemes, big pharma wicked games and so on. I think we have high chances to win!
(DIR) Post #B12EBtED263PRBjRaq by Xeniax@mastodon.ml
2025-12-08T09:53:28Z
0 likes, 1 repeats
We have just kicked off SplinterCon in Paris! Three days of workshops, round-tables, tool showcases ahead#splintercon
(DIR) Post #B12EmDLViFzeFyT4d6 by Xeniax@mastodon.ml
2025-12-08T10:00:07Z
0 likes, 2 repeats
Francesca Musiani @franmusiani talking about federation and the Fediverse as a way to fix ongoing fragmentation of Internet #splintercon @equalitie
(DIR) Post #B12HTvWLY0yFcfVY7k by Xeniax@mastodon.ml
2025-12-08T10:30:25Z
0 likes, 1 repeats
Yet another fascinating talk from the #GEODE team. Louis Pétiniaud talking about data routes and BGP manipulations as geopolitical tools. The map shows all the places that GEODE team has been to doing their fieldwork. https://geode.science #splinterCon
(DIR) Post #B12HnUyzvNdH6nF3gm by Xeniax@mastodon.ml
2025-12-08T10:33:58Z
0 likes, 1 repeats
Final keynote from the opening of #SplinterCon by Lai Yi Ohslen. She advocates for a multi-layered approach to measure Internet fragmentation, including user experience of splinternet (!) The internet has always been splintered – she says.
(DIR) Post #B1Rm0KmHIgTrGd58WO by Xeniax@mastodon.ml
2025-12-20T08:21:29Z
0 likes, 1 repeats
I hate those age verification laws. We might need "age VPNs", to help youth go online freely. #stopageverification
(DIR) Post #B1dhkU0f8kgDLYW0si by Xeniax@mastodon.ml
2025-12-26T10:47:22Z
1 likes, 2 repeats
#39c3tickets #39c3I have two tickets for 39c3 to sell, I had to cancel because of illness. Share this widely! Thanks a lot 💖
(DIR) Post #B1dhkdE6s7mfvrsNai by Xeniax@mastodon.ml
2025-12-26T11:14:37Z
0 likes, 0 repeats
Its a hard decision but I have to go with first came first served rule... Even though all of you people are amazing! I wish there was a sudden rain of 39c3 tickets for everyone! ☺️
(DIR) Post #B2VrJgqTCXocCgJTMm by Xeniax@mastodon.ml
2026-01-21T13:01:40Z
0 likes, 2 repeats
Belarusian government persecutes radio amateurs and sentences operators (life sentence or death penalty is at stake). Andrey Repetiy (EW1ABT) and Nikita Krasko (EW1AEH) were forced to publicly repent for the "crime" of technical curiosity and international communication. They were coerced on TV to renounce their own technical expertise as something harmful. Vyacheslav Benko (EW1ACE) remains behind bars alongside them.Lukashenko's propagandists presented the Belarusian Federation of Radioamateurs and Radiosportsmen (BFRR) as nothing more than a front for a "massive spy network" designed to "pump state secrets from the air." Propagandists claim that over fifty people have already been detained and more than five hundred units of radio equipment have been seized. These men have been indicted for High Treason and Espionage. Under the Belarusian Criminal Code, these charges carry sentences of life imprisonment or even the death penalty. Please read and share:https://freedium-mirror.cfd/https://steanlab.medium.com/mayday-389f5713fee4
(DIR) Post #B2bui5qxL8HFWbd02i by Xeniax@mastodon.ml
2026-01-24T12:31:24Z
1 likes, 2 repeats
"Microsoft said it receives around 20 requests for BitLocker keys a year and will provide them to governments in response to valid court orders"This should not have been technically possible in the first place... But that's Microsoft, you know...https://www.forbes.com/sites/thomasbrewster/2026/01/22/microsoft-gave-fbi-keys-to-unlock-bitlocker-encrypted-data/
(DIR) Post #B397XKTq2ksadtEgsa by Xeniax@mastodon.ml
2026-02-09T13:15:11Z
0 likes, 1 repeats
#westsyndrome #epilepsyToday is the Epilepsy Awareness day. As a mom of a kid who suffered from a catastrophic form of infant epilepsy known as the West Syndrome, I know how tricky epilepsy may be. We need to better understand this disease, advance medical research, develop equal counseling and community support for patients and caregivers. I want to share a message of hope. My daughter Lila is now 2.5 years old and she started to talk! She says phrases, she compares things, she can count so fast I am astonished. Yesterday we saw a couple with dogs at a cafe and she said five dogs. I could only see four of them but she saw little extra paws hidden under the table ;) What a smart little human she is! May all parents who are going through this journey keep hope in your hearts. We were promised our daughter won't ever walk or talk or even sit by herself. And here she is, thriving! And if you need any help with understanding West Syndrome, contact me. I am happy to help.
(DIR) Post #B3GseeUa5rHmghIRc0 by Xeniax@mastodon.ml
2026-02-13T07:10:36Z
0 likes, 1 repeats
For my Russian speaking friends / Для русскоязычных друзейМы завели тут канал с поэзией в Delta Chat. Постить будем аккуратно, не сильно часто. Подписывайтесь если интересно. https://i.delta.chat/#5E7E10178B99BDF07E6F0B7157C42B11B82FCE95&x=vUhpK-xtTXkQTfQObVsonbiP&j=W4sDwEC9WG4MHLjmouUHOR-Z&s=ifkKWsbs7BM5TecVTFzQYdMB&a=6ry9okp0w%40darkrun.dev&n=Poetry+channel&b=%F0%9F%96%A4+poetry+feed+%F0%9F%96%A4