Podcasts about AFM

The Rise of Vertical Filmmaking: Adapting to New Trends in the Film Industry In this episode of the Get Reelisms Podcast, hosts Adam Chase Rani and Christine Chen dive deep into the emerging trend of vertical filmmaking, popularized by platforms like TikTok and new short form drama platforms. They discuss the challenges and opportunities of directing and producing projects specifically made for mobile viewing. Christine shares her experience directing 'Truth or Dare Vertical' and the technical and creative hurdles involved. The conversation also touches on the impact of technological shifts on the film industry, including changes in distribution and audience behavior. Lastly, they provide insights into the evolving nature of film production and the importance of adapting to new formats and audience preferences.  Hosts: Adam Rani (@adamthechase)   & Christine Chen (@cchenmtf)  For more information about Christine Chen: christinewchen.comFor more information go to getreelisms.com For more information on ERZULIE go to: erzuliefilm.com  WEBISODE version of the Podcastgetreelisms.com 00:00 Introduction to Vertical Filmmaking 00:42 Meet the Hosts: Adam and Christine 01:06 Podcast Chaos and Tech Troubles 02:39 Vertical Filmmaking Trends and Challenges 04:25 The Rise of Vertical Content 07:34 Production Realities and Set Stories 12:13 Balancing Creativity and Client Demands 23:50 Client Control in Post-Production 24:22 Relief in Following Client Notes 25:17 Navigating Creative Ownership 26:53 Audience Perception and Director's Dilemma 27:35 Studio Influence on Filmmaking 27:58 The Case of Batman vs Superman 31:32 The Reality of Film Distribution 39:27 Challenges in International Distribution 45:45 Adapting to Industry Changes 52:36 Conclusion and Holiday Promotions Official Get Reelisms PageGet Reelisms Amazon StoreInstagram

Usually, when I share the gospel with people, I don't yell at them. But in that car, as I was being yelled at, I don't know what happened. I got emotional, and I started yelling back.“Remember this day! Not only your son, but YOU will be running to our church before your son.”                                                               ----------------Today's story is told by Sergo Namoradze, a member of AFM's International Field Operations department.Subscribe and leave us a review if you enjoyed listening to today's story!

Michael Ryan started his career working in the TV industry for Sir Lew Grade's UK company, ITC. In 1978 he formed J&M Entertainment with a colleague, a distribution sales agent for independent films. As J&M grew, it developed its business model to also take responsibility for financing new films & providing production finance.In 1980 Ryan and J&M were founder members of the American Film Marketing Association (AFMA) – later to be renamed Independent Film & Television Alliance (IFTA) – which was formed to provide an annual film market based in Los Angeles. Michael served two terms as Chairman of IFTA (2004-2008) and another three terms from 2015-2021.In 2000, Ryan partnered with Guy Collins. Between them they have financed, sold and produced over 200 films, including The Wild Geese, The English Patient, The General, Whats Eating Gilbert Grape, The Osterman Weekend, the Highlander series, Planet 51 and more recently, at GFM Films with Fred Hedman, Toei Animations Harlock, Absolutely Anything starring Simon Pegg and Simon West-directed action thriller Stratton starring Dominic Cooper. On July 15, 2022, GFM's Paws of Fury: The Legend of Hank, an independently financed and produced animated feature is based on Mel Brooks iconic Blazing Saddles that launched as a project by GFM Films at AFM in 2014, was released across 4,500 U.S. screens by Paramount.Please enjoy my conversation with Michael Ryan.Become a supporter of this podcast: https://www.spreaker.com/podcast/bulletproof-screenwriting-podcast--2881148/support.

Het was een dag vol tegenslagen. Minder bestellingen voor ASM International, een winstwaarschuwing bij CM.com en wéér een dalende omzet bij Randstad. Twee van die bedrijven verloren zelfs (bijna) een tiende van de beurswaarde.En dan vergeten we nog even SAP, het meest waardevolle beursbedrijf van Europa. Ook dat stelt teleur. Deze aflevering hebben we het over de resultaten van ASMI, CM.com en Randstad én kijken we waarom Europese beursbedrijven dit cijferseizoen zo teleurstellen. En of je misschien toch niet naar Amerika moet. Hoor je ook meer over de deal die president Trump sloot met Japan. De 'grootste handelsdeal ooit' noemt 'ie het. De Japanners gaan ruim 500 miljard dollar investeren én 15 procent importtarief betalen. Al is het volgens sommige echt een 'hele slechte deal'.Slecht gaat het niet bij KPN, de laatste tijd toch wel gezien als veilige haven in deze onzekere tijden. En toch wordt het niet beloond voor goede kwartaalcijfers. Hoe dat zit, vertellen we je deze uitzending. Hoor je ook waarom uitgerekend GoPro de verrassing van de beursdag is. Dat gaat tientallen procenten omhoog!See omnystudio.com/listener for privacy information.

Het was een dag vol tegenslagen. Minder bestellingen voor ASM International, een winstwaarschuwing bij CM.com en wéér een dalende omzet bij Randstad. Twee van die bedrijven verloren zelfs (bijna) een tiende van de beurswaarde.En dan vergeten we nog even SAP, het meest waardevolle beursbedrijf van Europa. Ook dat stelt teleur. Deze aflevering hebben we het over de resultaten van ASMI, CM.com en Randstad én kijken we waarom Europese beursbedrijven dit cijferseizoen zo teleurstellen. En of je misschien toch niet naar Amerika moet. Hoor je ook meer over de deal die president Trump sloot met Japan. De 'grootste handelsdeal ooit' noemt 'ie het. De Japanners gaan ruim 500 miljard dollar investeren én 15 procent importtarief betalen. Al is het volgens sommige echt een 'hele slechte deal'.Slecht gaat het niet bij KPN, de laatste tijd toch wel gezien als veilige haven in deze onzekere tijden. En toch wordt het niet beloond voor goede kwartaalcijfers. Hoe dat zit, vertellen we je deze uitzending. Hoor je ook waarom uitgerekend GoPro de verrassing van de beursdag is. Dat gaat tientallen procenten omhoog!See omnystudio.com/listener for privacy information.

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He tore down his room in searching for his Bible, pretending he was making some renovations in his room so that his parents wouldn't suspect anything.                                                               ----------------Today's story, coming from the Georgian project, is told by Sergo Namoradze, a member of AFM's International Field Operations department.Subscribe and leave us a review if you enjoyed listening to today's story!

On today's podcast: 1) President Trump sends out a wave of tariff letters, while suggesting he's open to negotiations. President Trump released letters threatening higher tariffs, but he extended the deadline for talks to Aug. 1, the day that the new levies will take effect. The letters were released two days before agreements were due from trading partners facing Trump’s so-called reciprocal levies.2) The death toll rises in Texas as questions remain about preparedness for the disaster. More than 100 people have been confirmed dead in floods that tore through central Texas over the weekend. The disaster has sparked debate about whether anything more could have been done to prevent it, with questions raised about warning systems, forecasts, and notification of people in the affected areas.3) A setback for Apple as a top AI executive leaves to join Meta. Ruoming Pang, a distinguished engineer and manager in charge of Apple's foundation models team, is leaving for Meta Platforms Inc. Meta offered Pang a package worth tens of millions of dollars per year, according to people with knowledge of the matter. Pang's departure could be the start of a string of exits from the AFM group, with several engineers telling colleagues they are planning to leave in the near future to Meta or elsewhere, the people said.See omnystudio.com/listener for privacy information.

Bitvavo-ceo Mark Nuvelstijn heeft miljoenen euro’s naar de illegale belegger Max R. overgemaakt en ING Bank vals geïnformeerd over zijn privébeleggingen, wat leidde tot zijn tijdelijke terugtreding bij het bedrijf. Documenten onthullen dat Nuvelstijn bewust verkeerde informatie verstrekte om banktransacties te ontlopen en met voorkennis wilde handelen. Dit roept vragen op over zijn integriteit als ceo van Bitvavo, dat onder toezicht van de AFM en De Nederlandsche Bank staat. Redacteur Sonny Motké verklaart de consequenties voor Nuvelstijn en Bitvavo. Lees: Bitvavo-ceo verstrekte ING valse informatie over privébeleggingen De Amerikaanse Congres stemde na een marathon van onderhandelingen in met president Trumps ‘One Big Beautiful Bill’. Deze wet, een combinatie van belastingverlagingen en bezuinigingen, stuit op stevige kritiek van de Democratische Partij en enkele Republikeinen. Hiermee krijgt President Trump zijn gewenste symbolische ondertekening op 4 juli. VS-correspondent Barbara Noordermeer vertelt over de gevolgen voor Amerika. Lees: Amerikaans Congres levert Trump zijn megawet Redactie: Sophia Wouda & Floyd Bonder Presentatie: Floyd Bonder See omnystudio.com/listener for privacy information.

De cryptomarkt maakte deze week een stevige sprong omhoog. De koers van Bitcoin noteert inmiddels boven de 109.500 dollar. Een directe aanleiding voor die stijging lijkt er niet te zijn, al volgt de cryptomarkt momenteel nauwgezet het sentiment op de Amerikaanse aandelenbeurzen. Die noteren rond recordniveaus, wat de vraag oproept of Bitcoin die lijn gaat doortrekken. Ook altcoins deden het goed, met Ethereum als positieve uitschieter. In Nederland is deze week het toezicht op de cryptosector officieel overgegaan naar de Autoriteit Financiële Markten (AFM). Dat volgt uit de inwerkingtreding van de Europese cryptowet MiCAR, die nu daadwerkelijk een vergunning verplicht stelt voor bedrijven die in Nederland willen opereren. Het gevolg is meteen zichtbaar: verschillende partijen zoals Bitonic, Coinmerce en Knaken beschikken nog niet over zo’n vergunning en mogen dus in principe geen activiteiten meer ontplooien op de Nederlandse markt. Partijen die al wel een AFM-vergunning of een erkende Europese vergunning hebben, zoals Bitvavo, Amdax en BTC Direct, mogen gewoon doorgaan. Voor bedrijven zonder vergunning betekent dit dat zij mogelijk hun marketing en klantenwerving moeten stopzetten. De toezichthouder geeft aan ‘maatwerk’ toe te willen passen, maar wat dat precies inhoudt is nog onduidelijk. Tegelijkertijd werpt het de vraag op of de AFM niet te streng is, zeker omdat Nederland hiermee vooroploopt in Europa: in veel andere lidstaten geldt eind dit jaar pas als deadline. De ambitie van de AFM om een voorbeeldrol te spelen op Europees niveau, leidt daarmee nu al tot merkbare marktverstoring. Buitenlandse partijen kunnen ondertussen wél legaal opereren in Nederland, zolang zij een MiCAR-vergunning hebben van een Europese toezichthouder. Dat schept mogelijk een ongelijk speelveld. Grote platforms zoals OKx en Crypto.com opereren bijvoorbeeld vanuit Malta, waar het toezicht minder streng is. Toch krijgen ze op basis van die vergunning volledige toegang tot de Nederlandse markt. Dat roept vragen op over het gewenste beschermingsniveau en de effectiviteit van een gezamenlijke Europese aanpak.Verder introduceert het Amerikaanse handelsplatform Robinhood een nieuwe toepassing in Europa: getokeniseerde aandelen. Daarbij wordt een aandeel in cryptovorm aangeboden, waarbij Robinhood zelf de onderliggende waarde in bewaring houdt. Dat maakt het mogelijk om fractioneel te beleggen, buiten reguliere beursuren te handelen en zelfs aandelen van niet-beursgenoteerde bedrijven zoals OpenAI en SpaceX te kopen. Daarmee zet Robin Hood een belangrijke stap in de convergentie van traditionele en cryptomarkten. Het platform maakt hiervoor gebruik van Arbitrum, een tweede laag bovenop Ethereum. Verwacht wordt dat andere grote partijen, zoals Coinbase en Kraken, deze stap spoedig zullen volgen. Deze week in de CryptocastEen gesprek met Bert de Groot, voorzitter van de branchevereniging voor Bitcoinbedrijven, en Andries Doets, advocaat. We hebben het over het juridisch conflict tussen de Nederlandse cryptosector en DNB, maar ook over de toekomst van Nederlandse cryptobedrijven onder de nieuwe Europese cryptowet. En er dreigt dus het één en ander fout te lopen. Met Daniël Mol bespreken we elke week de stand van de cryptomarkt. Luister live donderdagochtend rond 8:50 in De Ochtendspits, of wanneer je wilt via bnr.nl/podcast/cryptocast See omnystudio.com/listener for privacy information.

Achteraf betalen wordt steeds populairder in Nederland, en dat baart de Autoriteit Financiële Markten grote zorgen. Met name mensen tot 35 jaar komen door de service regelmatig in grote financiële problemen. Daarom pleit AFM voor strengere regels, zoals een kredietcheck en leeftijdsverificatie om gebruik door minderjarigen te voorkomen. Presentator Hans van der Steeg bespreekt dit met Daniëlle de Jager, manager krediet, betalen en sparen bij de AFM.

De cryptomarkt maakte deze week een stevige sprong omhoog. De koers van Bitcoin noteert inmiddels boven de 109.500 dollar. Een directe aanleiding voor die stijging lijkt er niet te zijn, al volgt de cryptomarkt momenteel nauwgezet het sentiment op de Amerikaanse aandelenbeurzen. Die noteren rond recordniveaus, wat de vraag oproept of Bitcoin die lijn gaat doortrekken. Ook altcoins deden het goed, met Ethereum als positieve uitschieter. In Nederland is deze week het toezicht op de cryptosector officieel overgegaan naar de Autoriteit Financiële Markten (AFM). Dat volgt uit de inwerkingtreding van de Europese cryptowet MiCAR, die nu daadwerkelijk een vergunning verplicht stelt voor bedrijven die in Nederland willen opereren. Het gevolg is meteen zichtbaar: verschillende partijen zoals Bitonic, Coinmerce en Knaken beschikken nog niet over zo’n vergunning en mogen dus in principe geen activiteiten meer ontplooien op de Nederlandse markt. Partijen die al wel een AFM-vergunning of een erkende Europese vergunning hebben, zoals Bitvavo, Amdax en BTC Direct, mogen gewoon doorgaan. Voor bedrijven zonder vergunning betekent dit dat zij mogelijk hun marketing en klantenwerving moeten stopzetten. De toezichthouder geeft aan ‘maatwerk’ toe te willen passen, maar wat dat precies inhoudt is nog onduidelijk. Tegelijkertijd werpt het de vraag op of de AFM niet te streng is, zeker omdat Nederland hiermee vooroploopt in Europa: in veel andere lidstaten geldt eind dit jaar pas als deadline. De ambitie van de AFM om een voorbeeldrol te spelen op Europees niveau, leidt daarmee nu al tot merkbare marktverstoring. Buitenlandse partijen kunnen ondertussen wél legaal opereren in Nederland, zolang zij een MiCAR-vergunning hebben van een Europese toezichthouder. Dat schept mogelijk een ongelijk speelveld. Grote platforms zoals OKx en Crypto.com opereren bijvoorbeeld vanuit Malta, waar het toezicht minder streng is. Toch krijgen ze op basis van die vergunning volledige toegang tot de Nederlandse markt. Dat roept vragen op over het gewenste beschermingsniveau en de effectiviteit van een gezamenlijke Europese aanpak.Verder introduceert het Amerikaanse handelsplatform Robinhood een nieuwe toepassing in Europa: getokeniseerde aandelen. Daarbij wordt een aandeel in cryptovorm aangeboden, waarbij Robinhood zelf de onderliggende waarde in bewaring houdt. Dat maakt het mogelijk om fractioneel te beleggen, buiten reguliere beursuren te handelen en zelfs aandelen van niet-beursgenoteerde bedrijven zoals OpenAI en SpaceX te kopen. Daarmee zet Robin Hood een belangrijke stap in de convergentie van traditionele en cryptomarkten. Het platform maakt hiervoor gebruik van Arbitrum, een tweede laag bovenop Ethereum. Verwacht wordt dat andere grote partijen, zoals Coinbase en Kraken, deze stap spoedig zullen volgen. Deze week in de CryptocastEen gesprek met Bert de Groot, voorzitter van de branchevereniging voor Bitcoinbedrijven, en Andries Doets, advocaat. We hebben het over het juridisch conflict tussen de Nederlandse cryptosector en DNB, maar ook over de toekomst van Nederlandse cryptobedrijven onder de nieuwe Europese cryptowet. En er dreigt dus het één en ander fout te lopen. Met Daniël Mol bespreken we elke week de stand van de cryptomarkt. Luister live donderdagochtend rond 8:50 in De Ochtendspits, of wanneer je wilt via bnr.nl/podcast/cryptocast See omnystudio.com/listener for privacy information.

In een nieuwe aflevering van onze podcast Stibbe Legal Insights duiken we in de wereld van finfluencers: online persoonlijkheden die beleggingsadvies geven of financiële producten aanprijzen via social media. Wat zijn de juridische grenzen van hun invloed? En hoe kunnen financiële instellingen verantwoord met hen samenwerken? Advocaten Roderik Vrolijk en Soeradj Ramsanjhal, beiden gespecialiseerd in financieel toezichtrecht, gaan hierover in gesprek met presentator Koos Tervooren. Ze bespreken de toename van finfluencer-activiteiten op platforms als TikTok, de aantrekkingskracht op jongeren, en de juridische risico's voor zowel influencers als financiële ondernemingen. Aan bod komen onder andere: Het onderscheid tussen informatie, aanbevelingen en beleggingsadvies De regels rond samenwerking tussen finfluencers en financiële instellingen Toezicht door de AFM, de Reclame Code Commissie en het Commissariaat voor deMedia Voorbeelden van boetes, zoals de zaak tegen Bux en de casus Grinta InvestDeze aflevering is bijzonder relevant in het licht van actuele Europese ontwikkelingen, waaronder het Retail Investment Package, dat strengere regels stelt aan marketing viafinfluencers.

Steeds meer cryptobedrijven opereren officieel onder het nieuwe Europese toezichtskader: MICAR. Daarmee lijkt de langverwachte vergunningsronde voor crypto-aanbieders eindelijk écht van start te zijn gegaan. Bedrijven als Bitvavo, BTC Direct en Amdax behoren tot de Nederlandse partijen die nu beschikken over de Europese licentie. Toch was het geen eenvoudige procedure. De implementatie van de regels nam ruim veertien maanden in beslag. Tegelijkertijd zijn er ook partijen die géén vergunning hebben weten te bemachtigen. Wat dat voor hen betekent, is nog onduidelijk, maar feit is dat ze zonder MICAR-registratie in veel EU-landen simpelweg niet mogen opereren. Is de AFM te streng geweest? Of namen partijen de het MICAR-traject onvoldoende serieus? Buiten Nederland is er eveneens beweging: grote internationale bedrijven vestigen zich vooral in financieel aantrekkelijke landen als Frankrijk en Duitsland. MICAR belooft een gelijk speelveld te creëren in de hele EU, maar of dat in de praktijk zo uitpakt valt nog te bezien. Intussen presteren de Amerikaanse aandelenmarkten opvallend goed, met nieuwe all time highs als gevolg. De vraag is dan ook wanneer Bitcoin weer een nieuw record neerzet. En dat terwijl er nog maar kort geleden grote zorgen waren over de wereldwijde economie, mede door de plannen van Donald Trump rondom nieuwe handelstarieven. De Fed lijkt voorlopig afwachtend, al pleit Trump juist voor snel ingrijpen. In eerdere bullmarkten gingen altcoins vaak harder omhoog dan Bitcoin, maar dat effect blijft dit keer uit. Dat roept vragen op over de dynamiek binnen de bredere cryptomarkt. Toch is er wel beweging rond Ether. Het beursgenoteerde bedrijf Bitmine heeft aangekondigd voor 250 miljoen dollar aan Ether te willen kopen, gefinancierd via de uitgifte van nieuwe aandelen. Eerder deed Sharplink Gaming iets vergelijkbaars, met geleend geld. Daarmee lijkt het concept van ‘treasury strategies’ — eerder vooral bekend uit de Bitcoinhoek — ook naar Ether door te sijpelen. Of dat een verstandige strategie is, blijft voer voor discussie. En zelfs binnen de Bitcoin Treasury Companies blijven de verrassingen komen, zoals het Nederlandse familiebedrijf dat 1.000 bitcoin op de balans zette. Co-host is Bert Slagter. Gasten Bert Slagter Links Host Daniël Mol Redactie Daniël MolSee omnystudio.com/listener for privacy information.

De Nederlandse cryptosector is in beweging. Verschillende grote partijen beschikken inmiddels over een vergunning onder de nieuwe Europese cryptowet MICAR, maar niet zonder slag of stoot. Tegelijkertijd staat het toezicht en de regelgeving in Nederland flink ter discussie, zowel door recente gebeurtenissen rond de AFM als door een juridisch conflict tussen cryptokoepel VBNL en toezichthouder De Nederlandsche Bank (DNB). Daarover praten we met twee gasten: Bert de Groot, voorzitter van de VBNL — voorlopig nog — en advocaat Andries Doets, die meerdere rechtszaken voor cryptobedrijven voerde, waaronder de walletverificatiezaak van Bitonic. De zaak tussen VBNL en DNB draait om de registratieplicht (of: vergunningsregime) die in Nederland gold voordat MICAR werd ingevoerd. Die plicht leidde tot hoge kosten voor cryptobedrijven, terwijl volgens de brancheorganisatie sprake was van oneigenlijke vergunningseisen. Het College van Beroep voor het bedrijfsleven gaf de sector daarin recentelijk deels gelijk, maar de zaak ligt nu ook nog bij het Europese Hof. Die uitspraak kan bepalend zijn voor hoe Europese regelgeving in lidstaten mag worden geïnterpreteerd. Voor Nederlandse cryptobedrijven gaat het om substantiële bedragen, met potentieel miljoenen aan onterechte toezichtskosten. De relatie met toezichthouders blijft daarmee een terugkerend thema. Onder MICAR is de rol van de AFM leidend geworden, wat tot een nieuwe dynamiek leidt. Toch klinkt er kritiek op de uitvoering: de vergunningstrajecten verlopen moeizaam en bedrijven die de deadline van 30 juni niet haalden, dreigen klantenstops opgelegd te krijgen. In het Financieele Dagblad werd onlangs beschreven hoe partijen zich ‘ernstig geknot’ voelen door de AFM. De strikte interpretatie van de wet in Nederland lijkt strenger dan in omliggende landen, wat volgens sommige betrokkenen kan leiden tot concurrentienadeel. Dat raakt ook aan de vraag of MICAR een gelijk speelveld creëert, of juist nieuwe ongelijkheid in de hand werkt. Intussen rijst ook de vraag of de Nederlandse sector de MICAR-toezichtskosten — naar verluidt zo’n 6 miljoen euro per jaar — wel kan dragen. Daarmee zijn partijen die vanuit een ander land naar Nederland paspoorten duidelijk in het voordeel. Creëert dat opnieuw een ongelijk speelveld? Gasten Bert de Groot Andries Doets Links Host Daniël Mol Redactie Daniël MolSee omnystudio.com/listener for privacy information.

Discussing the fight and  then I open up the discussion to absolutely anything! *** now on Spotify  ****** Get Best Selling videos on Fitness and Everything Martial Arts! Buy Here https://www.jujiclub.com use promo code summer50off and get 50% off your order! Buy Here https://www.jujiclub.com/collections/... Use Promo code ** summer50off ** AND GET 50% OFF ALL ITEMS  Prevent injuries and get in the best shape of your life with Coach Zahabi's best selling series "Strong & Stable 4 Life" Get "Strong & Stable Knees 4 Life" Learn about how to keep your knees free from injury and how to get incredible shape! Get "Strong & Stable Back 4 Life" This video is a must have!!! You cannot realize your full athletic potential until you develop a power and pain free back/core!!! Learn how the pros stay pain free and develop incredible power!  Get "Strong & Stable Shoulders 4 Life" Build powerful and pain free shoulder just like the pros!!!  Get "Strong & Stable Running 4 Life" Learn how to run injury free and get in the absolute best shape of your life!!! become a Cardio Machine!!! Video includes a PDF with Specific Running protocols!  Get "Strong & Stable Kettlebell" Learn the proper way to use a kettlebell!  Get "Strong & Stable Neck 4 Life" Learn how to be pain free with some very simple exercise and tolls, you will also learn how to safely built power in your neck! https://www.jujiclub.com/collections/... checkout Man Made Underwear https://manmadebrand.com/?srsltid=Afm... --------- Stay at the Tristar Dorms and Train at Tristar Gym with Coach Zahabi - Email  tsdorms@gmail.com  and reserve your room.  -----

“By blocking the wheels of a foreigner's car, it is more than just an aggressive move. It is a symbolic accusation of being a thief. In our West African culture, that is a serious insult to a guest. You are not only making yourself look bad, you are dishonoring your country.”                                                                ----------------Today's story is told by Michée Badé, AFM missionary formerly to the Otamarri and Dendi Projects in Benin, West Africa. Subscribe and leave us a review if you enjoyed listening to today's story!

Het nablussen van grote bedrijfsbranden wordt vaak gedaan door de commerciële bandweer. Zij nemen het werk van de drukbezette reguliere brandweermannen uit handen, maar hiervoor krijgen de getroffen ondernemers wel een fikse rekening achteraf. Redacteur Rutger Overstegen sprak met ondernemers die onverwacht een rekening op de mat kregen en vertelt waarom zij de kosten vaak niet vergoed krijgen. Lees: Bedrijven gaan gebukt onder onverwachte rekening van particuliere brandweer Ruim €1 mrd. Dat bieden buitenlandse private-equityfirma's op HSO group uit Nederland. De automatiseerder is gevestigd in Veenendaal en groeide de afgelopen jaren hard onder de huidige eigenaar, het Amerikaanse Carlyle. Redacteur Jan Braaksma vertelt wat het voor bedrijf is. Hij legt uit waarom het nu zo aantrekkelijk is voor de private-equityfirma's, terwijl de fusiemarkt verder op zijn gat ligt. Lees: private equity biedt meer dan €1 mrd op automatiseerder uit Veenendaal Toezichthouder AFM gaat tijdelijk bepalen wat cryptobedrijven wel en niet mogen. Daarbij dreigt een verbod op marketing en het aannemen van nieuwe klanten. De cryptosector is woest. Ze hebben een vergunning nodig van de AFM om te voldoen aan de nieuwe Europese cryptoregels genaamd MiCa, maar krijgen naar eigen zeggen te veel te weinig tijd. In andere EU-landen gaat het een stuk beter en dat brengt risico's met zich mee voor Nederland, vertelt cryptoredacteur Pim Brasser. Lees: Cryptosector ernstig beknot door uitblijven AFM-vergunningen Redactie: Sophia Wouda en Anna de Haas Presentatie: Anna de Haas See omnystudio.com/listener for privacy information.

Discussing the fight and  then I open up the discussion to absolutely anything! *** now on Spotify  ****** Get Best Selling videos on Fitness and Everything Martial Arts! Buy Here https://www.jujiclub.com use promo code summer50off and get 50% off your order! Buy Here https://www.jujiclub.com/collections/... Use Promo code ** summer50off ** AND GET 50% OFF ALL ITEMS  Prevent injuries and get in the best shape of your life with Coach Zahabi's best selling series "Strong & Stable 4 Life" Get "Strong & Stable Knees 4 Life" Learn about how to keep your knees free from injury and how to get incredible shape! Get "Strong & Stable Back 4 Life" This video is a must have!!! You cannot realize your full athletic potential until you develop a power and pain free back/core!!! Learn how the pros stay pain free and develop incredible power!  Get "Strong & Stable Shoulders 4 Life" Build powerful and pain free shoulder just like the pros!!!  Get "Strong & Stable Running 4 Life" Learn how to run injury free and get in the absolute best shape of your life!!! become a Cardio Machine!!! Video includes a PDF with Specific Running protocols!  Get "Strong & Stable Kettlebell" Learn the proper way to use a kettlebell!  Get "Strong & Stable Neck 4 Life" Learn how to be pain free with some very simple exercise and tolls, you will also learn how to safely built power in your neck! https://www.jujiclub.com/collections/... checkout Man Made Underwear https://manmadebrand.com/?srsltid=Afm... --------- Stay at the Tristar Dorms and Train at Tristar Gym with Coach Zahabi - Email  tsdorms@gmail.com  and reserve your room.  -----

Met het bombardement op drie Iraanse nucleaire doelen hebben de Verenigde Staten zich rechtstreeks gemengd in de oorlog tussen Israël en Iran. Terwijl tal van landen waarschuwen voor een escalatie van het conflict en aandringen op een diplomatieke oplossing, sprak president Donald Trump van een ‘spectaculair militair succes’. Met de aanval willen de VS definitief voorkomen dat aartsvijand Iran een nucleair wapen kan ontwikkelen. Amerika correspondent Barbara Noordermeer praat je bij. Lees: Met aanval op Iran lijkt Trump afscheid te nemen van isolationistische koers Toezichthouders maken zich zorgen over beursbedrijven die miljarden lenen om bitcoins te kopen. Deze trend, aangewakkerd door een nieuwe bitcoinhype rondom ‘cryptopresident’ Donald Trump, leidt tot een verhoogd systeemrisico voor de financiële markten, waarschuwt de AFM. Strategy, Metaplanet en Stablecoinbedrijf Circle spelen een belangrijke rol in deze ontwikkelingen, terwijl afzwaaiend DNB-president Klaas Knot ook alarm slaat over stablecoins. Redacteur financiële markten Pim Brasser legt uit hoe deze interacties de markten kunnen beïnvloeden. Lees: Toenemende zorgen over beursbedrijven die miljarden lenen om bitcoins te kopen Een terugroepactie van 33.000 Citroën-auto's leidt tot chaos in dealerland. Automobilisten vrezen defecte airbags en dealers als Van Mossel en Hedin worden overspoeld met vragen. Terwijl Stellantis, het moederbedrijf van Citroën, een rijverbod instelde voor enkele modellen, reageerden zij niet op telefoontjes. Transportredacteur Hans de Jongh geeft inzicht in de gevolgen voor de Nederlandse autodealers. Lees: Chaos in dealerland door Citroëns terugroepactie van 33.000 auto’s Redactie: Sophia Wouda & Floyd Bonder Presentatie: Floyd Bonder.See omnystudio.com/listener for privacy information.

De traditionele financiële wereld en de cryptosector lijken elkaar sneller dan ooit te vinden. Coinbase sloot deze week een opvallende samenwerking met American Express en brengt een gezamenlijke creditcard op de markt. Daarmee bundelen twee zwaargewichten – één uit de oude en één uit de nieuwe wereld – de krachten. De kaart wordt gekoppeld aan cryptotegoeden en komt met een puntensysteem dat lijkt op de klassieke loyaliteitsprogramma’s van creditmaatschappijen. Of er veel vraag is naar zo’n product valt nog te bezien, maar het signaal dat ervan uitgaat is duidelijk: crypto is onderweg naar de mainstream. Ook Shopify zet een flinke stap in de cryptowereld. De webshopgigant integreert BASE, het Ethereum-netwerk van Coinbase, en accepteert binnenkort de USDC-stablecoin als betaalmiddel. Daarmee maakt Shopify directe betaling met digitale dollars mogelijk, zonder tussenkomst van banken. Dat is goed nieuws voor consumenten en verkopers die sneller en goedkoper willen afrekenen. Ondertussen werd bekend dat Circle, het bedrijf achter stablecoin USDC en nauw verbonden aan Coinbase, ruim een week geleden naar de beurs is gegaan. De koers gaat voorlopig één kant op: omhoog. In eenzelfde beweging hebben we betaaldienst Stripe, die cryptowallet Privy overneemt. Privy ontwikkelt software waarmee gebruikers controle houden over hun private keys, zonder in te leveren op gebruiksgemak. Voor Stripe is het een logische stap richting crypto-integratie in het reguliere betalingsverkeer. Dat al deze bewegingen vrijwel gelijktijdig plaatsvinden, wijst op een bredere trend: de Amerikaanse markt maakt een inhaalslag, geholpen door politieke wil en heldere regelgeving. In Europa begint dat langzaam door te sijpelen, al is het tempo daar beduidend lager. De markt laat deze week zien dat zelfs geopolitieke spanningen nauwelijks nog invloed hebben. Investeerders blijven instappen, waaronder het Japanse Metaplanet en het mediabedrijf van Donald Trump, dat sinds kort ook officieel in bitcoin mag beleggen. Verder lijkt de kans toe te nemen dat ook altcoins zoals XRP en Solana binnenkort hun eigen ETF krijgen in de VS. Dat zou, net als bij bitcoin eerder dit jaar, kunnen leiden tot bredere acceptatie en nieuwe kapitaalstromen richting crypto. In Nederland loopt de overgangsperiode van cryptowet MICAR ten einde. Per 30 juni moet iedereen een vergunning hebben van de AFM. In Nederland lijkt het vergunningentraject voor sommige bedrijven te ambitieus, zeker in vergelijking met andere Europese landen. En dat kan nog weleens wat problemen opleveren. Gasten Mauro Halve Links Host Daniël Mol Redactie Daniël MolSee omnystudio.com/listener for privacy information.

Afmælisþáttur Plodersins og FM957!! Svali mætir og fer yfir sögu FM og hvað hefur breyst í gegnum tíðina. Eva Ruza og Bent í uppgjöri vikunnar. Uppréttir og lóðréttir á sínum stað. Hvenær fær fólk aldurs complexa. Þetta og meira til í þætti dagsins!

Tony Zhang PhD, CFA, Blaine Reed CFA, AFM and Rich Excell CFA, CMT are back talking markets after a bit of a break. Do Blaine and Rich think global investors are sick of the US? With 10 year yield at 4.5%, will it hit 4.2% or 4.8% first?  What will the Fed do given the data we have seen?  Have a listen to find out

Thinking about selling your film internationally? In this episode, I break down exactly how to navigate film markets like AFM, EFM, and Cannes, identify ideal distributors, and position your movie to maximize overseas sales. Tune in and take your indie film global!

A mysterious disease called acute flaccid myelitis (AFM) has been appearing in emergency rooms for about a decade. The disease has caused otherwise healthy children to lose the ability to move their arms and legs, and some become completely paralyzed. AFM is caused by a virus that's a cousin of the polio virus, earning it the nickname "the new polio.” Journalist and physician Eli Cahan joins Host Flora Lichtman to explain what doctors have been observing, the research efforts toward developing a vaccine, and what this emerging disease reveals about our readiness for future outbreaks and pandemics.Read Cahan's article about what fighting this “new polio” might look like as our healthcare infrastructure gets dismantled.And, learning more about some non-cancerous cells may help researchers better understand how cancer progresses. When you think about how cancer spreads in the body, you're probably thinking about cancer cells—they divide uncontrollably, form into tumors, and hide from the immune system. So, it makes sense that studying the behavior of these cells is critical to our understanding of cancer. But now, researchers are looking more closely at the non-cancerous cells that co-exist within tumors and the surrounding tissues. They make up what's called the “colocateome.” Taking this more holistic approach to cancer research may help explain why some treatments don't work for all patients, and eventually may lead to more effective therapies. To better understand this expanding field, Host Ira Flatow talks with Sylvia Plevritis, a Stanford University cancer researcher. Guests:Dr. Eli Cahan is a journalist and physician based in Boston, Massachusetts.Dr. Sylvia Plevritis is a professor of biomedical data science and radiology at Stanford University.Transcript is available on sciencefriday.com. Subscribe to this podcast. Plus, to stay updated on all things science, sign up for Science Friday's newsletters.

200 - Afmælisþáttur kl: 15 - TAKEOVER Hákon Örn og Inga Steinunn TAKEOVER by Stefán Gunnlaugur Jónsson

“No one was expecting us. Women and children ran screaming into the jungle, never having seen a white man, but soon came creeping back to see the unusual visitors.”                                                               ----------------Today's stories are told by David Lackey, former AFM career missionary on the May River Project in Papua New Guinea, and Bara Patel, AFM career missionary on the Himadri Project in Central Asia. Subscribe and leave us a review if you enjoyed listening to today's stories!

In de Amerikaanse Senaat is met ruime meerderheid ingestemd met het bespreken van de zogeheten GENIUS-wetgeving. Het wetsvoorstel, dat met 66 stemmen voor en 32 tegen door een eerste stemming kwam, richt zich met name op strengere regelgeving voor stablecoins. Daarmee komt het onderwerp nadrukkelijk op de politieke agenda in Washington. Wat verandert er voor consumenten? Waarom steunen ook partijen als Tether deze wet? En hoe moet deze wet bijdragen aan het behoud van de wereldwijde dominantie van de Amerikaanse dollar? Tegelijkertijd klinkt er in de Senaat ook kritiek op voormalig president Donald Trump, want hij heeft met zijn bedrijf World Liberty Financial óók een eigen stablecoin. Daarnaast is er meer nieuws rond stablecoins. Volgens berichtgeving van de Wall Street Journal zouden grootbanken als JPMorgan, Bank of America en Citigroup gezamenlijk werken aan een eigen stablecoin-project. Daarbij ligt de vraag voor of traditionele banken in een inhaalslag verwikkeld zijn, of daadwerkelijk voor een alternatief kunnen zorgen. In de prijsanalyse staat opnieuw de vraag centraal hoe lang het positieve momentum van Bitcoin standhoudt. Afgelopen week bereikte de munt een nieuwe all-time high van 112.000 dollar. Sindsdien schommelt de koers rond dat niveau, zonder grote correcties. Zelfs kleine terugvallen lijken snel opgevangen te worden. Met Bert Slagter bekijken we of deze situatie houdbaar is, zeker als de markt in hetzelfde tempo blijft stijgen. Ook werpen we een blik op de Bitcoin-conferentie in Las Vegas. Is het evenement relevant genoeg om ook koersimpact te veroorzaken? De namen op de lineup zijn in ieder geval groot. Tot slot bespreken we opnieuw de Europese cryptowet MiCAR, een terugkerend thema als co-host Mauro Halve in de studio is. In Nederland nadert een belangrijke deadline: vanaf volgende maand moeten cryptobedrijven een vergunning hebben om in ons land actief te zijn. Toch zijn er opvallend weinig partijen die zo’n vergunning daadwerkelijk binnen hebben. Ligt dat aan de zwaarte van de aanvraag? Of is de AFM traag met behandelen? Ook blikken we op de koplopers binnen Europa. Nederland begon voortvarend, maar lijkt inmiddels ingehaald. Gasten Mauro Halve Links GENIUS-act gaat snel Amerikaanse grootbanken werken aan stablecoin Host Daniël Mol Redactie Daniël MolSee omnystudio.com/listener for privacy information.

Er komt nieuwe antiwitwas-regelgeving op ons af. Na de vijfde herziening van de Europese richtlijn (AMLD5) komt er nu voor het eerst een volledige antiwitwaswet. Wat gaat dat voor gevolgen hebben? Voor cryptobedrijven en hun klanten? En dan komt er ook nog een Europese toezichthouder, met een zetel in Frankfurt. Melissa van den Broek, Senior manager integrity & Compliance bij KPMG Nederland, praat ons bij over alle nieuwe regels vanuit Europa. Centraal staat het nieuwe Europese AML-pakket, bestaande uit vier wetten: de bekende TFR (onderdeel van MiCAR), een Europese anti-witwasautoriteit (AMLA), een verordening (AMLR) en een nieuwe richtlijn (AMLD6). In deze aflevering nemen we het hele pakket door. Wat is het uiteindelijke doel van al deze regels? En wanneer is regelgeving eigenlijk ooit ‘af’? Melissa legt uit waarom ook de cryptosector onder het Europese anti-witwasbeleid moet vallen, maar ook hoe complex het geheel aan het worden is. De AMLR is van de vier wellicht het meest ingrijpend: geen richtlijn maar een verordening, en dus direct van toepassing in alle EU-lidstaten. Dat roept vragen op over de verhouding tot bestaande Nederlandse wetgeving zoals de WWFT. Nederland staat bekend als braafste jongetje van de klas, maar in hoeverre krijgen nationale toezichthouders als DNB of AFM straks nog ruimte voor eigen interpretatie? En wat gaat dit betekenen voor cryptobedrijven en hun klanten? Er komen strengere eisen voor klantdata, transparantie over uiteindelijk belanghebbenden (‘UBO’s’) en politiek prominente personen (‘PEP’s’), en hogere kosten voor compliance. Ook consumenten merken er iets van: zo komt er een Europese cashlimiet van 3000 euro bij betalingen in de winkel. Daarnaast wordt wereldwijd gezocht naar harmonisatie van wetgeving. En met de komst van AMLA, een nieuwe Europese anti-witwasautoriteit, verandert ook het toezichtlandschap. Wordt de rol van AFM kleiner? En hoe streng zal AMLA worden? Melissa bespreekt de reikwijdte van hun bevoegdheden, mogelijke boetes en de invloed die ze krijgen op het anti-witwasbeleid zelf. Tot slot kijken we naar de druk die al deze regels leggen op bedrijven in de sector. Met naast dit pakket ook MiCAR en DAC8 in aantocht, is het de vraag of organisaties het tempo van de wetgever nog wel kunnen bijbenen. Co-host is Mauro Halve. Gasten Melissa van den Broek Mauro Halve Links Stem op Mauro! Host Daniël Mol Redactie Daniël MolSee omnystudio.com/listener for privacy information.

We didn't have a Christmas tree this year, so my brother and I made one from banana leaves and a coconut branch.                                                               ----------------Today's stories are told by Sarah Unglaub and Amy Ackmody, AFM missionary alumni on the Lobi Project in Burkina Faso, Western Africa. Subscribe and leave us a review if you enjoyed listening to today's stories!

Jet had made the decision to be baptized. But he hadn't counted the cost of what it would mean to tell his family. This would require full commitment.                                                               ----------------Today's stories are told by Andy Murphy, AFM career missionary on the Tai-Kadai Project in Southeast Asia and Joshua Lewis, AFM career missionary on the Great River People Project in Cambodia. Subscribe and leave us a review if you enjoyed listening to today's stories!

Het zijn turbulente tijden in de wereld door het presidentsschap van Donald Trump in Amerika. Financiële markten gaan alle kanten op, waardoor het ook een extra drukke periode is voor de Autoriteit Financiële markten (AFM). Daarnaast is er ook een sterke oproep om één sterk Europa te vormen en Amerikaanse bedrijven scherp aan te pakken. Allemaal ingewikkelde zaken voor de AFM. Hoe ziet het werk van de AFM er onder deze omstandigheden uit? En zijn zij voorstander van één centrale Europese toezichthouder? Laura van Geest, bestuursvoorzitter van de AFM, is te gast in BNR Zakendoen. Macro met Boot Elke dag een intrigerende gedachtewisseling over de stand van de macro-economie. Op maandag en vrijdag gaat presentator Thomas van Zijl in gesprek met econoom Arnoud Boot, de rest van de week praat Van Zijl met econoom Edin Mujagić. Economenpanel De handelsoorlog raast onverminderd voort. De VS voert nu importheffingen van 145 procent voor Chinese importeurs. China sloeg op vrijdag nog terug met importheffingen van 125 procent jegens de VS. Ondertussen lopen de effectieve rentes op Amerikaans schuldpapier nog altijd op, terwijl de dollar daalt. Maar geen fabriekseigenaar aan beide kanten van de Stille Zuidzee kan dit geweld aan. Wie knippert er eerst: Trump, China of de obligatiemarkten? En: Nederlandse huizenprijzen dalen op korte termijn, terwijl er meer (nieuwbouw)huizen worden verkocht. Dat en meer bespreken we om 11.30 in het economenpanel met: Menno Middeldorp, hoofd van RaboResearch en Marijn Jongsma, redacteur macro-economie bij het Financieele Dagblad. Contact & Abonneren BNR Zakendoen zendt elke werkdag live uit van 11:00 tot 13:30 uur. Je kunt de redactie bereiken via de e-mail zaken@bnr.nl Abonneren op de podcast van BNR Zakendoen kan via bnr.nl/zakendoen, of via Apple Podcast en Spotify. See omnystudio.com/listener for privacy information.

In this episode, I'm giving you a behind-the-scenes look at how we set up meetings, pitch films, and close deals. From wrangling 18 buyer meetings a day to figuring out which trailer makes a film sell—this is a real-world guide to the hustle of film sales.

Niemand weet hoe en wanneer de handelsoorlog gaat eindigen. Zelfs aanstichter Donald Trump niet en toch moeten bedrijven de komende weken hun aandeelhouders een outlook voorschotelen. Gaan vertellen wat de impact is van die handelsoorlog op de cijfers. Het cijferseizoen begint, met misschien wel de meest chaotisch aanloop ooit.En wij van BNR Beurs gaan je proberen voor te bereiden op dat cijferseizoen. UBS verwacht dat de winst van Amerikaanse bedrijven dit jaar met 0 procent groeit. Waar zitten dan nog de lichtpuntjes en hoe staat het ervoor in Europa? Valt het daar mee of tegen? Je hoort het deze aflevering.Dan hebben we het ook over China. Dat slaat hard terug naar Trump en laat duidelijk merken niet bang te zijn voor hem en zijn heffingen. Met een directe aanval op Trump, die volgens China 'fout op fout' stapelt. De Chinezen beloven 'tot het einde' te vechten 'als de VS zijn zin doordrijft' en niet 'te buigen voor chantage'.Boos is ook Elon Musk. Hij is adviseur voor Trump, maar boos op een andere adviseur van Trump. De architect van de handelsoorlog is dat, Peter Navarro. Musk kan zijn bloed wel drinken, want 'zijn' Tesla wordt hard getroffen door de importheffingen. Volgens Musk is Navarro 'dommer dan een zak stenen' en 'echt een idioot'. Ook hebben we het over Apple. Dat verplaatst de productie van de iPhone voor een groot deel uit China. Precies wat Trump wilde! Al worden de telefoons niet in de VS gemaakt, maar ergens anders...See omnystudio.com/listener for privacy information.

Ham knelt down beside me, got close and said in a low voice, “Are you a Christian? I have some friends who are Christians and they have been telling me that I should be a Christian.”                                                               ----------------Today's stories are told by David Hicks, former AFM career missionary on the Tonga project in Mozambique and Joshua Lewis, current AFM career missionary on the Great River People project in Cambodia. Subscribe and leave us a review if you enjoyed listening to today's stories!

05 Suburban 4x4 noise 00 Jeep Wrangler won't pass smog 23 GMC 1500 AFM or not? 22 Suburban Rubs when turning 15 Silverado 8 speed issue 04 Rendezvous gear oil changes 02 2500 Chevy fuel gauge broken only at stop signs. We talk to Shift4Tommorrow about alternative ways to recycle your car when it's at it's end-of-life. 

"Who in his right mind would hike into a den of thieves just for the sake of curiosity? They come here at night and steal our cattle and our pigs. Watch out, they're all thieves and murderers!"                                                               ----------------Today's stories are told by Herb and Linda Prandl, former AFM career missionaries on the Lobi Project in Burkina Faso. Subscribe and leave us a review if you enjoyed listening to today's stories!

Het is zo ver: de Strategic Bitcoin Reserve is daar. Vorige week donderdag ondertekende President Trump de Executive Order om de SBR in het leven te roepen. In deze podcast leggen we je uit wat er in die EO staat en wat we daarvan vinden. Verder is Peter in de boete gedoken die BUX op de deurmat kreeg van de AFM, bespreken we de crypto plannen van de Spaanse bank BBVA en heeft Bert natuurlijk een heerlijke marktupdate. Veel luisterplezier!Probeer Bitcoin Alpha 2 weken gratis!Meetup 11 aprilSatoshi Radio wordt mede mogelijk gemaakt door: Amdax, Watson Law, HVK Stevens en onze hoofdsponsor Bitvavo.Timestamps(00:00:00) Welkom en Podcast Introductie(00:05:30) Hebben wij een hekel aan XRP?(00:18:00) Wat is het energieverbruik van AI?(00:24:00) Bookmark van Bart: OKX heeft MiFID II licentie binnen(00:34:00) Bookmark van Bart: Amerika heeft een Strategic Bitcoin Reserve(01:06:00) Bookmark van Peter: Begich & Lummis (re)introduceren de BITCOIN Act(01:17:00) Bookmark van Peter: AFM slingert BUX op de bon: € 1,6 miljoen(01:33:00) Bookmark van Bert: Spaanse bank BBVA toestemming voor bitcoin trading & custody(01:37:00) Bookmark van Peter: OCC: “cryptocurrency activities are permissible in the federal banking system”(01:40:00) Bookmark van Bart: Nic Carter over de VS overheid en BTC(01:45:00) Marktupdate(02:16:12) EindeBookmarksBert:Spaanse bank BBVA toestemming voor bitcoin trading & custodyOCC: “cryptocurrency activities are permissible in the federal banking system”Bessent: We are going to keep the U.S. the dominant reserve currency in the world and we will use stable coins to do that.Bart:America will be the Bitcoin superpower of the world.Executive order textFact sheetOverton window shiftedFor the first time ever I'm worried about the future of BitcoinThis is the threatnever sell your Bitcoin...that's a little phrase that they say... I don't know if they're right or not...who the hell knows.What about the bitfinex coins?Draadje van BartOKX heeft MiFID II licentie binnenWe zijn eigenlijk niet veel opgeschoten sinds 2021Rumble koop 188 bitcoinCivil Asset Forfeiture: man moet zijn bitcoins inleverenThese paranoid scenarios that bitcoiners worried about for years are coming to pass now, except bitcoiners are cheering for them.Nic Carter over de VS overheid en BTCPeter:AFM slingert BUX op de bon: € 1,6 miljoenBinance krijgt miljardeninjectie van MGXBegich & Lummis (re)introduceren de BITCOIN ActEuropa leider op het gebied van cryptovriendelijke banken

06 Ram AFM Misfire how to fix using oil system cleaner? 11 Suburban Hard Cold Start fix. 02 K3500 Brake light fix. 20 Ram AFM DOD Disable? 71 GMC Sprint El Camino Stored over a decade getting it running. 12 Nissan Altima bad fuel mileage fix. 97 F250 Trans front seal leaking fix 2010 Kia Soul Belt squeal? 97 Tahoe cold start clatter fix? 06 Mustang hard to press shifter button 18 Kia Forte leaks water on floorboard how to leak test? 06 Ram and old tractors when to change oil when used very little? 08 Cobalt low power uphill When to change oil on new Duramax 3.0 diesel? Subaru random mis due to carbon on valves. 2013 GMC Sierra disabling AFM the right way or not?

In this episode of Fire Service Data and Tech Talk, host Eddie Buchanan discusses the challenges fire departments with limited technological resources face.  The episode focuses on the valuable work of the Africa Fire Mission (AFM), and features three guests: Dave Moore, AFM's founder, Nancy Moore, cofounder, and Jose Ngunjiri, fire safety officer for AFM. They shed light on their mission to provide training and resources to fire departments in developing nations, primarily across Africa. They delve into the gap in understanding and the critical nature of respect between communities and fire services. They also emphasize the importance of education, advocacy, and data collection to improve response times and fire prevention strategies. Listeners will learn about on-the-ground approaches, including how grassroots education initiatives and open data sharing can transform community engagement and fire safety outcomes. 

Rare condition research is evolving, and patient communities are driving the breakthrough. In this special Rare Disease Day episode, we explore the challenges and opportunities shaping the future of rare condition therapies. From groundbreaking gene therapy trials to the power of patient-driven research, our guests discuss how collaboration between families, clinicians, researchers, and regulators is paving the way for faster diagnoses, equitable access to treatments, and innovative approaches like nucleic acid therapies and CRISPR gene editing. With insights from Myotubular Trust, we follow the journey of family-led patient communities and their impact on advancing gene therapy for myotubular myopathy - showcasing how lived experience is shaping the future of medicine. However, while patient-driven initiatives have led to incredible progress, not every family has the time, resources, or networks to lead these research efforts. Our guests discuss initiatives like the UK Platform for Nucleic Acid Therapies (UPNAT), which aims to streamline the development of innovative treatments and ensure equitable access for everyone impacted by rare conditions. Our host Dr Ana Lisa Tavares, Clinical lead for rare disease at Genomics England, is joined by Meriel McEntagart, Clinical lead for rare disease technologies at Genomics England, Anne Lennox, Founder and CEO of Myotubular Trust and Dr Carlo Rinaldi, Professor of Molecular and Translational Neuroscience at University of Oxford. "My dream is in 5 to 10 years time, an individual with a rare disease is identified in the clinic, perhaps even before symptoms have manifested. And at that exact time, the day of the diagnosis becomes also a day of hope, in a way, where immediately the researcher that sent the genetics lab flags that specific variant or specific mutations. We know exactly which is the best genetic therapy to go after." You can download the transcript, or read it below. Ana Lisa: Welcome to Behind the Genes.    [Music plays]  Anne: What we've understood is that the knowledge and experience of families and patients is even more vital than we've all been going on about for a long time. Because the issue of there being a liver complication in myotubular myopathy has been hiding in plain sight all this time, because if you asked any family, they would tell you, “Yes, my son has had the odd liver result.”  There were some very serious liver complications but everybody thought that was a minor issue, but if we are able to engage the people who live with the disease and the people who observe the disease at a much more fundamental level we may be able to see more about what these rare genes are doing.  [Music plays]  Ana Lisa: My name is Ana Lisa Tavares, I'm Clinical Lead for Rare Disease research at Genomics England and your host for this episode of Behind the Genes. Today I'm joined by Anne Lennox, Founder and CEO of the Myotubular Trust, Dr Meriel McEntagart, an NHS consultant and Clinical Lead for Rare Disease Technologies at Genomics England, and Dr Carlo Rinaldi, Professor of Molecular and Translational Neuroscience at the University of Oxford.    Today we'll be hearing about the importance of involving the patient community, particularly as new rare therapies are developed, and discussing the forward-facing work that's happening that could have potential to unlock novel treatments for many rare conditions.  If you enjoy today's episode we'd love your support. Please like, share and rate us on wherever you listen to your podcasts. Thank you so much for joining me today.  Please could you introduce yourselves.   Anne: I'm Anne Lennox, I'm one of the founders of the Myotubular Trust, a charity that raises research funds for and supports families affected by the rare genetic neuromuscular disorder myotubular myopathy.  Meriel: I'm Meriel McEntagart, I'm a consultant in clinical genetics in the NHS and I have a special interest in neurogenic and neuromuscular conditions.  Carlo: Hi, I'm Carlo Rinaldi, I'm Professor of Molecular and Translational Neuroscience at the University of Oxford. I'm a clinician scientist juggling my time between the clinic and the lab where we try to understand mechanisms of diseases to develop treatments for these conditions.  And I'm also here as a representative of the UK Platform for Nucleic Acid Therapies, UPNAT. Thanks for your invitation, I'm very pleased to be here.  Ana Lisa: Thank you. Meriel, I'd love you to tell us a bit about your work and how you met Anne, how did this story start?  Meriel: Thank you. Well prior to being a consultant in clinical genetics, I spent 2 years as a clinical research fellow in neuromuscular conditions, and as part of that training I worked on a project where the gene for myotubular myopathy had just been identified, and so there was a big international effort to try and come up with sort of a registry of all the genetic variants that had been found as well as all the clinical symptoms that the affected patients had, and then do kind of a correlation of the particular variant mutation with symptoms.   I worked when I was training to be a clinical geneticist because of my interest in neuromuscular conditions so when I eventually became a consultant at St George's Hospital I was actually interviewed by the Professor of Paediatrics and he knew Anne and her son, when Anne was looking for more information about the condition he suggested that perhaps I might be a good person for Anne to talk to.  Ana Lisa: Thank you. Interesting connections. Anne, can you tell us your story and how this led you to found the Myotubular Trust?  Anne: Yes, thanks Ana-Lisa.  Well, as many families will tell you when they're newly diagnosed with a rare disease, you go from knowing nothing about a condition to being one of the few deep experts in that condition because there are so few deep experts. So this happened to us in 2003 when our son, Tom, was born, and when he was born he was floppy and his Apgar scores, the scores they do on new-born babies, were pretty poor, and before long we knew that it was more than just momentary issues at birth.  And, cutting a very long story short, 5 weeks later he was diagnosed with this very rare neuromuscular genetic disorder that we didn't know we had in the family.  We were told that this was a very serious diagnosis.    At that time – more than 20 years ago – over 80% of those boys didn't make it to their first birthday and the stark statistic we had in our head a lot was that only 1% made it past the age of 10. And that has changed due to better ventilator and breathing equipment, etc, but at the time we expected that he might not make it to his first birthday.    We were very lucky, we had Tom longer than one year, we had him for nearly 4 years, 4 very lovely years where it was tough, but he was a really lovely member of our family.  Despite being really weak he managed to be incredibly cheeky and bossy, and he was a great little brother for his big sister. We were also very lucky that he was being looked after by Professor Francesco Muntoni, who is Head of the Paediatric Neuromuscular Service at Great Ormond Street. And, like Carlo, he is a clinical researcher and actually that I found to be amazing as a family member because you knew what was happening out there and Professor Muntoni, other than living with the reality day to day you want to know where things are going.    We began to realise that back then 20 years ago the more common rare neuromuscular diseases were finally beginning to get some fundamental research funds, like Duchenne, spinal muscular atrophy, and Professor Muntoni was very good at explaining to lay non-scientific parents like us that one day the technologies that would lead to a cure, that would re-engage proteins for other conditions and would translate down eventually into the possibility of replacing myotubularin, which is the protein not being produced or not being produced enough in myotubular myopathy. And then we began to understand actually what the barriers to that would be, that translating developments in more common, or let's say more prevalent conditions, would be hard to do without some translation research being done; you could not just not lag years behind, you could lag decades behind if you haven't done some other work.    So, I met Wendy Hughes, another mother, of a boy called Zak who was a few years older than Tom, and these were the days before social media, and it was amazing to be in contact with another family going through something similar and we had great conversations. But then they were also looked after by Professor Muntoni and we particularly began to develop the idea as 2 families that we might be able to raise some research funds towards this concept of keeping pace with the scientific developments.  And then we discovered there was no charity we could channel those funds through. Even the umbrella body for neuromuscular diseases who were covering 30 to 40 conditions, frankly, they just couldn't trickle their funding down into investing in every neuromuscular disease, and slowly but surely it dawned on us that if we did want to make that difference we were going to have to set up our own charity.   So that's what we eventually did and back in 2006, we founded what was actually the first charity in Europe dedicated to myotubular myopathy – luckily, more have come along since – and we were dedicated to raising research funding. In fact, it wasn't our goal to set up another charity but around that time, about a year in, we happened to go to a meeting where the Head of the MRC, the Medical Research Council, was giving a talk and he said that in the last few years the MRC had begun to really realise that they couldn't cure everything, that they couldn't cure the diseases that would be cured in the next millennium from a top down perspective. There had to be a trick, there had to be a bottom up as well, because that was the only way this was going to happen. And I have to say that that was a really reassuring moment in time for us to realise that we weren't just chasing pipe dreams and trying to do something impossible, that there was a role for us.    Ana Lisa: I think it would be really interesting for people to hear your story and the amazing set-up and fundraising that you've done, and at the same time it would be really good for us to reflect on how this isn't feasible for every patient and every family and how we're going to need to work cooperatively to move forwards with rare therapies.  Anne: When we explored the idea with Professor Muntoni and Meriel and others about setting up a charity one of the really reassuring things that Professor Muntoni got across to us was that this wasn't about raising the millions and millions it would take to fund clinical trials but the issue in the rare disease space was funding the proof of principle work, the work where you take a scientist's hypothesis and take it over the line, and the rarer the disease, the less places there are for a scientist to take those ideas. And the example he gave us was a piece of research like that might cost a hundred to a couple of hundred thousand, if you fund a piece of work like that and if it is successful, if the scientist's principle gets proven, then behind you it's much easier for the bigger muscle disease charities to also invest in it. It's harder for them to spread their money across all the very rare diseases hypothesis out there, but if you've helped a scientist get over the line they'll come in behind you and then they won't be the ones who fund the tens of millions that it takes to run a clinical trial.    If it's got potential, then that's where the commercial world comes in, and that's where the biotechs come in. So he'd given the example of if you spent £ten0,000 on a piece of research and it actually is proven, in behind you will come the bigger charities that would put in the million that takes it to the next phase, and in behind them will come the bio-checks that'll provide biotechs that'll provide the tens of millions.    And then, you know, a lot of what happens relies on serendipity as well, we know that, and you could easily run away with the idea that you made everything happen but you don't, you stand on the shoulders of others. And our very first grant application in our first grant round, which received extraordinary peer review for how excellent the application was, was a £100,000 project for a 3-year project that had gene therapy at the core of it by a researcher called Dr Ana Buj Bello at Généthon in Paris. This piece of research was so promising that 18 months in she and another researcher were able to raise $780,000 and, as Professor Muntoni predicted, from the French muscle disease charity AFM and the American muscle diseases charity MDA.  And 18 months into that 3 years it was so promising that a biotech company was started up with $30 million funding, literally just on her work.    So that doesn't always happen but, as Professor Muntoni explained, our job was not that $30 million, our job was that first £100,000, and our job was also to make ourselves known to the people in the neuromuscular field.  If you have lab time, if you have research time and you have a choice where you're putting it there is a place you can go to for a myotubular myopathy related grant application, so it's not just that this will come to us out of the blue, people will have done prior work, and our existence makes it worth their while, hopefully, to have done that prior work.  Ana Lisa: That's an amazing story how you've set up this charity and how successful that first application for gene therapy was. I'd love to hear more about that gene therapy and did it get to the clinic and to hear that story from you.  Because I think there are a lot of learnings and it's really important that the first patients who are treated, the first families that are involved, the researchers who start researching in this area, the first treatments lead the way and we learn for all the other treatments for all the other rare conditions that we hope and that together as a community we can share these learnings.  Anne: Yeah. I sometimes describe it a bit like going out into space. When you see a rocket going off look at how many people are behind and the amount of work that's been done, the degree of detail that's managed, and then you go out into space and there are a whole load of unknowns, and you can't account for all of them.  Who knows what's out there in this sphere.  But the amount of preparation, it feels similar to me now, looking back.  We were so idealistic at the beginning.  Our grant to Dr Buj Bello was 2008 and actually it is a really fast time in, the first child was dosed in the gene therapy trial in September 2017.  Ana Lisa: So, we're talking less than 1 years.  Anne: Yeah. And in the meantime obviously as a charity we're also funding other proof of principle research. One of the founding principles of the charity was to have a really excellent peer review process and scientific advisory board so that we wouldn't get carried away with excitement about one lab, one research team, that everything would always come back to peer review and would be looked at coldly, objectively. I don't know how many times I've sat in a scientific advisory board meeting with my fingers crossed hoping that a certain application would get through because it looked wonderful to me, and then the peer review comes back and there are things you just don't know as a patient organisation. So, yes, in those 9 years we were also funding other work.  Ana Lisa: You've just given an interesting perspective on sharing the learnings between the scientists, clinicians, the experts in a particular condition, if you like, and the families, and I'd be really interested to hear your views on what's been learnt about how families and the patient community can also teach the clinical and scientific community.  Anne: So, the first child was dosed in September 2017 and by the World Muscle Society Conference 2 years later in October 2019 the biotech had some fantastic results to show. Children who had been 24-hour ventilated were now ventilator-free, which, unless you know what it's like to have somebody in front of you who's ventilator-dependent, the idea that they could become ventilator-free is just extraordinary.    However, one of the things we've learnt about gene therapy is that we are going out into space so there are extraordinary things to be found, and extraordinary results are possible, as is evidenced here, but there is so much that we don't know once we are dealing with gene therapy. So unfortunately, in May, June and August of 2020, 3 little boys died on the clinical trial. So we have a clinical trial where the most extraordinary results are possible, and the worst results are possible, and both of those things are down to the gene…  What we discovered and what is still being uncovered and discovered is that myotubular myopathy is not just a neuromuscular disorder, it is a disorder of the liver too, and these children didn't die of an immune response, which is what everybody assumes is going to happen in these trials, they died of liver complications.    And one of the things that has come out of that, well, 2 sides to that. Number one is that it is extraordinary that we have found a treatment that makes every single muscle cell in the body pick up the protein that was missing and produce that protein, but also what we've understood is that the knowledge and experience of families and patients is even more vital than we've all been going on about for a long time. Because the issue of there being a liver complication in myotubular myopathy has been hiding in plain sight all this time, because if you asked any family they would tell you, “Yes, my son has had the odd liver result, yes.”    We could see something that looked like it was not that relevant because it was outside the big picture of the disease, which was about breathing and walking and muscles, but actually there was this thing going on at the same time where the children had liver complications. There were some very serious liver complications but everybody thought that was a minor issue but if we are able to engage the people who live with the disease and the people who observe the disease at a much more fundamental level we may be able to see more about what these rare genes are doing.  Ana Lisa: Yeah, thank you very much for sharing such a moving story and with such powerful lessons for the whole community about how we listen to the expertise that families have about their condition, and also I think the really important point about how we tackle the research funding so that we're including and sharing learnings from the conditions that are initially studied in greater depth, and we hope that many more conditions will be better understood and more treatments found and that actually the learnings from these first gene therapy trials will really help inform future trials, not just for gene therapies but also for many other novel therapies that are being developed.  [Music plays] If you're enjoying what you've heard today, and you'd like to hear some more great tales from the genomics coalface, why don't you join us on The Road to Genome podcast. Where our host Helen Bethel, chats to the professionals, experts and patients involved in genomics today. In our new series, Helen talks to a fantastic array of guests, including the rapping consultant, clinical geneticist, Professor Julian Barwell, about Fragile X syndrome, cancer genomics and a holistic approach to his practice - a genuine mic-drop of an interview. The Road to Genome is available wherever you get your podcasts. [Music plays] Ana Lisa: Carlo, I would really like to come to you about some of the initiatives that are happening in the UK, and particularly it would be really interesting to hear about the UK Platform for Nucleic Acid Therapies as a sort of shining example of trying to do something at a national scale across potentially many different rare conditions.    Carlo: Thanks, Ana-Lisa. Thanks very much, Anne, for sharing your fantastic story. I mean, I just want to iterate that as clinician scientists we do constantly learn from experiences and constantly learn from you, from the patient community, and this is absolutely valuable to push the boundary. And I really liked your vision of a rocket being launched in space and I would imagine that this is a similar situation here. So, we are facing a major challenge. So, there is over 7,000 rare diseases in the world and with improvements of genetic diagnosis this is only increasing. So, in a way rare diseases is the ultimate frontier of personalised medicine and this poses incredible challenges.   So, you mentioned the bottom-up approach and the top-down approach and in a way, both are absolutely necessary. So your story is a fantastic story but also makes me think of all the other families where they don't share perhaps the same spirit, you know, they are in areas of the world that are not as well connected or informed, where patient community simply cannot be ‘nucleated', let's say, around the family. So, there is definitely an issue of inclusivity and fair access.    So, what we're trying to do at UPNAT, which is the UK Platform for Nucleic Acid Therapy, is to try to streamline the development both at preclinical and clinical level of nucleic acid therapies. So, we'll start with antisense oligonucleotides just because those are the molecules of the class of drugs that are most ‘mature', let's say, in clinic. So, there are several antisense oligonucleotides already approved in the clinic, we know that they are reasonably safe, we understand them quite well, but of course the aspiration is to then progress into other forms of gene therapy, including gene editing approaches, for example.   And one of the activities that I'm involved, together with Professor Muntoni, is to try to streamline the regulatory process of such therapies and in particular curate a registry of, for example, side effects associated with nucleic acid therapy in the real world, and you would be surprised that this is something that is not yet available.  And the point is exactly that, it's trying to understand and learn from previous mistakes perhaps or previous experiences more in general.    And this is very much in synergy with other activities in the UK in the rare disease domain.  I'm thinking of the Rare Disease Therapy Launchpad, I'm thinking of the Oxford Harrington Centre, I am thinking of the recently funded MRC CoRE in Therapeutic Genomics. These are all very synergistic. Our point is we want to try to amplify the voice of the patient, the voice of the clinicians working on rare disease, and we want to systematise. Because of course one of the risks of rare disease therapies is the fragmentation that we do all these things in isolation. And I would argue that the UK at the moment leveraging on the relatively flexible and independent regulatory agencies, such as the MHRA, on the enormous amount of genetics data available through Genomics England, and of course the centralised healthcare system, such as the NHS, is really probably the best place in the world to do research in the rare disease area, and probably I'm allowed to say it because I'm a non-UK native.       Ana Lisa: Thank you, that's a brilliant perspective, Carlo, and across all the different therapeutic initiatives that you're involved with. And, Carlo, presumably - we're all hoping - these different initiatives will actually lead to ultimately a bigger scaling as more and more novel therapies that target both our RNA and DNA and actually are working, I guess further upstream in the pathway.    So classically in the past it's been necessary to work out all the underlying biology, find a druggable target somewhere in that pathway and then get a larger enough clinical trial, which can be nearly impossible with many of the rare and ultra-rare conditions or even, as you've said, the sub-setting down of more common condition into rarer subtypes that perhaps can be treated in different ways.  And with the many new different treatments on the horizon, ASO therapies, as you've said, is a place that's rapidly expanding, and also crisper gene editing. I'd be really interested to hear your reflections on how this might scale and also how it might extend to other new treatments.  Carlo: Yeah, that's exactly the right word, ‘scaling up'. I mean, there will be of course very unique challenges to every single rare disease but I would argue that with genetic therapies, such as ASOs or crisper gene editing, the amount of functional work that you need to do in a lab to prove yourself and the scientific community that this is the right approach to go for can be certainly very important but can be less just because you're addressing very directly because of the disease.    And then there are commonalities to all these approaches and possibly, you know, a platform approach type of regulatory approval might serve in that regard. You know, if you are using the same chemistry of these antisense oligonucleotides and, you know, similar doses, in a way the amount of work that you need to produce to again make sure that the approach is indeed a safe approach and an effective approach might be also reduced.    I would say that there are also challenges on other aspects of course, as you were saying, Ana-Lisa. Certainly the typical or standard randomised placebo control trial that is the standard and ultimate trial that we use in a clinical setting to prove that a molecule is better than a placebo is many times in the context of rare diseases simply not possible, so we need to think of other ways to prove that a drug is safe and is effective.   This is something that we all collectively as a scientific community are trying to address, and the alliance with the regulatory agencies, such as the MHRA, and you said that you have found your interaction with the MHRA very positive, and I can tell you exactly the same. So we are all trying to go for the same goal, effectively, so trying to find a way to systematise, platformise these sort of approaches. And I guess starting with antisense oligonucleotides is really the right place to go because it's a class of drugs that we have known for a long time, and we know it can work.  Ana Lisa: Meriel, can you tell us a little about the National Genomic Research Library at Genomics England and how this could link with initiatives to find many more patients as new treatments become available for rare and ultra-rare conditions?  Meriel: Yes, I think what's wonderful now is actually that what we're really trying to do is give everybody the opportunity to have their rare condition specifically diagnosed at the molecular level, and the way in which that is being done is by offering whole genome sequencing in the NHS currently in England but to all patients with rare diseases.    And so, it's about trying to establish their diagnosis. And as well as that, even if the diagnosis isn't definitely made at the first pass when the clinical scientists look at the data, because the whole genome has been sequenced, actually all that information about their genome, if they consent, can then be put into the National Genomics Research Library.  And that is a fantastic resource for national and international researchers who get approved to work in this trusted research environment to make new disease gene discoveries and identify these diagnoses for patients.  What's also offered by Genomics England as well is when the National Genomics Library data results in a new publication, the discovery of a new gene or perhaps a new molecular mechanism that causes a disease we already know about, that feeds back into the diagnostic discovery pathway within Genomics England back onto the diagnostic side of all the data.    So, patients who may have had genetic testing previously using whole genome sequencing where they've, if you like, had their sequencing done before the diagnosis was sort of known about, will also be picked up. And so, what this is really doing is trying to kind of give this really equal platform for everybody having testing to all have the same opportunity to have their diagnosis made, either on the diagnostic side or with research.  Ana Lisa: So, sort of on a cohort-wide scale as new discoveries are made and published you can go back and find those patients that may actually have that diagnosis and get it back to them, which is brilliant.  Meriel: Exactly. And this speeds up the whole process of getting these diagnoses back to people. So on a regular basis in the NHS, we will get feedback from the Diagnostic Discovery Pathway about “Here's some patients who you requested whole genome sequencing from a number of years ago and actually now we think we know what the particular molecular condition is.”  And so, it's key of course for our patients with rare conditions to make that molecular diagnosis because then we're able to have them identified for our colleagues who are doing this ground-breaking research trying to bring therapies for these rare conditions.  Ana Lisa: Thank you. And I hope that, as currently, if a novel genetic mechanism, as you've just described, is identified that could explain a rare condition that those patients can be found and they can receive that diagnosis, even many years later, and hopefully as novel treatments become available and say there's a chance to individualise ASO therapies, for example, to start with, that one could also go and look for patients with particular variants that could be amenable potentially to that treatment. And that's really sort of exciting that one could look for those patients across England, irrespective of which clinic they're under, which specialist they're under, and I think that could be really powerful as new treatments develop. I suppose, Meriel, if somebody comes to see you now in clinic are things different?  Meriel: Well, I think one of the things for me when patients come to clinic now is we might have an idea about what we think their condition is, maybe even we think it's a specific gene. And we can offer whole genome sequencing and so it's not just the way we used to do things before by looking just at the coding regions of the gene, we can find more unusual ways in which the gene can be perturbed using whole genome sequencing.  But let's say we don't make the diagnosis. I encourage my patients, if they're comfortable with it, to join the National Genomics Research Library, because really it's been incredibly productive seeing the new genetic discoveries that are coming out of that, but as well I say to them, even if we don't get the diagnosis the first time round when we look at the data, actually this is a constant cycle of relooking at their data, either if they're in the NGRL or as well on the Diagnostic Discovery Pathway side of the service that's run by Genomics England. So yeah, I feel like it's a very big difference; they don't have to keep coming every year and saying, “Is there a new test?” because actually they've had an excellent test, it's just developing our skills to really analyse it well.  Ana Lisa: Yes, and our knowledge, the technology and the skills keep evolving, certainly.  And I think one of the things that I'm sort of hearing from this conversation is that balance of hope and realism, Carlo we were talking about earlier how you need all the pieces of the puzzle to be lined up - so the regulatory agency, the clinicians, all the preclinical work has to have been done, monitoring afterwards for side effects - every piece of the puzzle has to be lined up for a new treatment to make it to a patient.    And, Anne, I'd like to come back to you because we've talked about this before, how one balances these messages of optimism and hope which are needed for bringing everybody together as a community to crack some of these very difficult challenges highlighted by treatments for rare and ultra-rare conditions and at the same time the need for realism, a balance conversation.  Anne: Yeah, that was one of our big learnings through the gene therapy trial and other trials we've had in the condition. As a rare disease charity, you do everything. You know, my title is CEO, but I tell people that's Chief Everything Officer because there's only a few of you and you do everything. So, you go and you lead the London Hope Walk and you also are a layperson on the Scientific Advisory Board and you also send out the emails about grants... And so, you could easily as a small rare disease charity conflate different communication messages because you're in a certain mode.  And so we have been from the early days in the mode of raising hope for people to say, “Look, we can make a difference as a patient community, we could raise funds, we might be able to move things forward, you've got the power to make a difference if you want to.” That's one set of hope.  And it's not dreamlike hope, we're linked to the reality of there are great breakthroughs.  So, you know, in the world of spinal muscular atrophy these clinical trials have led somewhere very quickly, so we're not selling false hope, we're talking about the difference we can make.    But then as soon as you flip into “There's a clinical trial being run” that's a completely different type of communication and you cannot conflate that message with the previous message.  And we always say to everybody, “We're your team, we're a family, we're a team, we all help each other.  When you are considering joining a clinical trial your team is the clinical trial team.    The other team does other things for you but the people you need to work with and ask hard questions of and listen hard to, that's your clinical trial team led by the principal investigator because then you're in that with them. And, you know, the reality of the fact that many, many clinical trials don't work as we wish they would be and the decision you make for your child, your baby, your little one, to join a clinical trial… because that's what it comes down to in our disease, has to be made with that team, not the team that's selling you a fundraising event. It's worth reminding rare disease patient organisations we're wearing different hats and the hope and the realism are different tracks you have to go down.    But at the same time as being realistic you also have to keep remembering that there is still grounds for hope, we are moving forward. And 21 years ago, when Tom was born the idea that you would be able to get all of the muscles in the body to switch back on – putting it in lay terms – seemed like a bit dream. Well, that is what has happened in the gene therapy clinical trial, we just have to now make it safer and understand more about what we're dealing with. So, the 2 things, the hope and the realism, do exist side by side.  Ana Lisa: I think that perfectly encapsulates a lot of the messages around rare disease therapies where there's such hope that novel treatments will really target directly the DNA or RNA to potentially correct the problem across many different rare conditions and therefore actually making treatments one day suddenly available to a much, much bigger population of people with rare conditions than we could've dreamt of 20 years ago or perhaps now, and at the same time this massive need to work cooperatively to all make this as fair, as equitable. Not everybody is going to have the opportunity to fundraise massively to be an expert about their condition, and the importance of sharing these learnings and also really, really listening to the patient community and really, as Carlo was saying, keeping track of side effects, having registries/databases to share these is going to be incredibly important.  [Music plays]  Ana Lisa:  Anne, can you tell us a little about your reflections on equity from the patient community perspective?  Anne: Well I mentioned serendipity early and one of the aspects of serendipity that played into our favour for setting up the Myotubular Trust was that by hook or by crook Wendy Hughes, who set up the charity with me, and I were both able to devote time at that period of our lives to setting up a charity. When my husband, Andrew, and I were told that Tom would more than likely die before his first birthday, one of the decisions we made as a family was that he would never not be with a parent, we would always have someone around, and that kind of meant someone had to give up a full-time job and that was me.  We thought, “If Tom has a few scarce months on the planet, we'll be with him.” And then when Tom lived to be nearly 4, as a family we got used to living on one salary and we were very lucky that we could pay the mortgage that way and run our family that way and eventually that meant I had the time to run the charity.    That doesn't happen that easily, that's a tall order, particularly when you have somebody in the family who has such high needs. And one of the things that I have often thought about is that in the rare disease space we could do with a different funding model for rare disease charities, we could, in an ideal world I have this nirvana that I imagine where there's a fund that you can apply to that is contributed to by the people who make profits out of finding rare disease cures - so the pharmaceutical companies and the biotechs - and there's a fund that they contribute to and that if you have a rare disease and you are willing to set up an organisation that supports families, that raises research funds, that provides a way of hearing the patient voice, then you could apply to that for running cost funds and then you'd be able to run this charity. And then you wouldn't have to rely on whether you live in an area where people will raise money for you or…  We were very lucky that we came across a few great benefactors who would give us money for running the charity, which is actually how we fund it.    All the research money we raise goes 100% into research, not a penny of it goes towards running costs because we have serendipitously found people who will be benefactors for the charity, but we're relying on a lot of good luck for that kind of model to work. And when you look at how much profit is made from developing rare disease treatments and cures – which is fine because that's what puts the passion and that gets people working on it – then why not have an advance fund to run rare disease charities? One of my nirvana dreams.  Ana Lisa: It's good to dream. Indeed, my hope is that there will be some amazing shining examples that lead the way that open doors, make things possible, prove that something can work and how and that then that will enable many other treatments for many additional rare conditions to be added in so that if you've learnt how this particular treatment modality works for this rare condition and there was funding behind it and everything else that's needed that then you can, the learning from that, I'm going to use the word ‘tweak', which sounds minor and could be very major but actually the concept that you can then tweak all those learnings and findings so that that same type of treatment modality could be adapted to treat somebody else with a different rare condition in a different location would be absolutely incredible and really powerful, given that if something like 85% of rare conditions affect less than one in a million people it's not going to be feasible to use the same strategies that have been used in the past for very common conditions.    One of the other big barriers is the cost of developing treatment for ultra-rare conditions.  Where it's a small number of patients that you have and therefore all the challenges that come with monitoring, checking for efficacy, monitoring safety and ultimately funding the challenges are much greater, however if some of these treatment modalities are also going to be used to treat common conditions it might be that actually there's a lot more cross-talk between the nano-rare, ultra-rare, rare and common conditions and that we can share a lot of that learning. I'd love to hear from each of you where you hope we will be for rare disease and rare therapies.  Carlo: Well my dream is that in 5 to 10 years' time an individual with a rare disease is identified in the clinic, perhaps even before symptoms have manifested, and at that exact time the day of the diagnosis becomes also a day of hope in a way where immediately the researcher, the centre, genetics lab, flags that there are the specific mutations, we know exactly which is the best genetic therapy to go after, antisense oligonucleotides as opposed to CRISPR editing, and a path forward, both at the preclinical and clinical level, to demonstrate and to cure these patients eventually is already laid out in front of the patient.  So, transforming the day of their diagnosis as a day of hope, this is my dream with the next ten years.  Ana Lisa: Thank you, that's a wonderful dream. Meriel, can I come to you?  Meriel: Yes, I think I just want to echo Carlo.  We've had great developments and progress with getting whole genome sequencing into the NHS for testing but what we really need is for it to be fast and efficient and getting those diagnoses established quickly. And we have had that set up now and we're really getting there in terms of speed, but then what we need is exactly what's the next step and actually structure like UPNAT that are developing these processes that we can then say to the patient, “And from there, now that we've established your diagnosis, this is what we have options to offer.”  Ana Lisa: Brilliant. And presumably that if the diagnosis isn't achieved now there is a hope that it will be achieved in the future as well. Anne...  Anne: Well, stepping one hundred per cent into the patient's shoes rather than the scientific side that we don't so much influence....  stepping in the patient's shoes, in 5 years' time I would absolutely love it if we were in a situation where all the parties that have come to the table looking at a therapy or in the earlier research genuinely want to bring the patient voice into the room. As Carlo talked about, there's even going to be more and more and more of these rare diseases, then those voices, those few people who have experience of it, they may be able to shed light on something. Maybe even sometimes don't even know it's a fact that they know but that were brought to the table as passionately as everything else is brought to the table.  [Music plays]  Ana Lisa: We'll wrap up there. Thank you so much to our guests, Anne Lennox, Carlo Rinaldi and Meriel McEntagart, for joining me today as we discuss the collaborative power of working together and look to the future of rare therapies that could have the potential to unlock treatments for many rare conditions. If you'd like to hear more like this, please subscribe to Behind the Genes on your favourite podcast app.  Thank you for listening.  I've been your host, Ana-Lisa Tavares. This podcast was edited by Bill Griffin at Ventoux Digital and produced by Naimah Callachand.  

WTF IS AFM?—Feeld is a dating app “for the curious” and its users are an adventurous, thoughtful bunch. And Feeld is also a tech company that happens to be led by thoughtful long-term types who see the value in print as a cornerstone for their community of customers. Enter A Fucking Magazine.Led by editors Maria Dimitrova and Haley Mlotek, AFM is a cultural magazine about sex that is also not about sex. Maybe it's about everything. Or maybe my old lit prof in college was right and everything really is about sex. The first issue of the magazine is out and it demands attention because it is beautiful and smart and literate. And also because it feels like something new.Discussions about AFM also lead to discussions about custom publishing: There is no hiding Feeld in the pages of AFM. All of the money behind the magazine is from Feeld, and half the contributors are also users of the app. Customers, in other words.As someone who came out of the custom world, I have long said the best custom media were the products of brands that were confident and forward thinking; when a brand saw itself more as patron and less as custodian. Meaning they didn't get overly involved.Luckily, the higher ups at Feeld are relatively hands off, and allow Maria and Haley to do their thing. Which is very fucking smart.—This episode is made possible by our friends at Freeport Press. Print Is Dead (Long Live Print!) is a production of Magazeum LLC ©2021–2025

Are film festivals like Sundance, Toronto, and Cannes the best place to sell your movie, or should you focus on film markets like AFM, EFM, and the Marché du Film? In this episode, we break down the key differences between festivals and markets, revealing where real deals happen and how filmmakers can maximize their chances of securing distribution.

Silhouettes of trees and floating grass reflecting in the mirror-like water loomed around us like black ghosts, ready to swallow us up should our boat miss a turn. Mother and daughter huddled around the expectant woman, tending to her needs by the dim light of a kerosene lamp.                                                                  ---------------- Today's stories are told by Stephen Erickson, a former AFM missionary to the Gogodala people and now an AFM field director. Subscribe and leave us a review if you enjoyed listening to today's story!

Cough. COUGH!  Robert's poor wife was vomiting up hookworms.“Oh, dear! I don't have any worm medicine to treat her with,” Laurie thought. “Hmm, I wonder . . .”                                                                     ----------------Today's stories are told by Laurie Erickson, a former AFM missionary to the Gogodala people and now an AFM field director. Subscribe and leave us a review if you enjoyed listening to today's story!

Why does my car have no heat? 16 Camry Are my brake pad indicators wrong on a 22 AT4 Chevy? How do I store a car? 06 Mustang Why does AFM fail on a truck and how to avoid it? How to fix a Ford Fusion TV screen in dash? Do timing chains go bad on 2011 Silverado trucks? What 351 engines are big blocks in Mustangs? 1974 Mustang Why does my battery go dead? 09 Lincoln MKX How to fix a forklift hot start?

Tuk-tuk-tuk-tuk-tuk-tukah! Tuk-tuk-tuk-tuk-tuk-tukah! It's the three-legged gecko again. . . singing. It has no reason, in my opinion, to do that in the middle of the night.                                                                    ----------------Today's stories are told by Arnold Hooker, a former AFM missionary, during his time on projects in Malaysia. Subscribe and leave us a review if you enjoyed listening to today's story!

Mary McGee and Malcolm Smith were racing pioneers and legends, and they both died a day apart last week, so we are dedicating this episode to them. You may have heard of Malcolm Smith due to him being featured in the greatest motorcycle film of all time, On Any Given Sunday, but chances are you hadn't heard of Mary until her recent death. Mary was a car racer, motorcycle road racer and off road motorcycle racer. She was the first woman to race in the AFM and FIM, and the first PERSON to ride solo in the grueling Baja 500. She was an amazing talent who was often discriminated as a women in a man's sport just because she was too good. Fortunately her story is being told in a new documentary called Motorcycle Mary, and we have filmmaker Haley Watson join us to share her experiences getting to know Mary, and some of the stories that didn't make the film. Check out Motorcycle Mary on Youtube and other streaming platforms. Malcolm Smith is the greatest motorcycle to have ever lived according to Liza, and she's willing to fight you over this. Smith won eight gold medals between 1966 and 1976 in the International Six Day Trial. The International Six Day Trials, a form of off-road motorcycle Olympics, is the oldest annual competition sanctioned by the FIM dating back to 1913. He was a five-time overall winner of the Baja 1000 (two on motorcycles and three on cars); a four-time winner of the Baja 500 (one in motorcycles and three in cars); has twice won the Mint 400 in Nevada and the Roof of Africa Rallye; finished fourth in the 1988 Paris–Dakar Rally on cars; and was the overall winner of the 1987 Atlas Rallye in Morocco. Both Mary and Malcolm were in the AMA Hall of Fame, and will be remembered for their infectious joy of riding, and inspiring people around the world. With Liza, Stumpy John, Sophia, Scottie, Naked Jim and Bagel. breakingawayadventures.com/misfits-rally-vol-3 Join our Discord at discord.gg/hpRZcucHCT www.motorcyclesandmisfits.com motorcyclesandmisfits@gmail.com www.patreon.com/motorcyclesandmisfits www.zazzle.com/store/recyclegarage www.youtube.com/channel/UC3wKZSP0J9FBGB79169ciew

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