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🌻 1 Month 🌻 #theharts #HLH #thefinalpeicetoourpuzzle

6/2/2024, 10:48:04 AM

3 hari menuju Hari Lingkungan Hidup Sedunia 2024! . . Pada bulan Juni, terdapat agenda lingkungan yang sangat penting, yaitu Hari Lingkungan Hidup Sedunia 2024, yang diperingati setiap tanggal 5 Juni setiap tahunnya. . Secara global, perayaan Hari Lingkungan Hidup Sedunia 2024 berfokus pada restorasi lahan, menghentikan penggurunan, dan membangun ketahanan terhadap kekeringan dengan slogan “Our Land. Our Future”. . . #wargijabar sudah siap menyambut HLH2024? . . . . #dlhjabar #JabarKita #pilahsampah #JawaBarat #Jabar #HLH #HLH2024 #harilingkunganhidupsedunia #harilingkunganhidup #harilingkunganhidupsedunia2024 #worldenvironmentday #worldenvironment #worldenvironmentday2024

6/2/2024, 7:20:10 AM

जरूर पधारे 🙏🙏 #harlaljat #harlaljatbarmer #barmer #hlh #rajasthan

6/1/2024, 8:36:43 PM

Thank you, Bricks & Minifigs, for your sponsorship!! Join us!! Visit 5ktoFightHistio.org! Together we can move mountains! 💙🏃 #5KtoFightHistio #VisitCos #LiamsLighthouse #LLF #HLH #LCH #5ktoFightHistioSponsor #bricksandminifigs @bamcoloradospringssouth

6/1/2024, 5:00:27 PM

FEDERAL A | HURACÁN ✅ ALDO BOLADO NO SEGUIRÁ COMO DT Y ALÍ VOLVERÁ A OCUPAR EL CARGO Tras la derrota ante Gutierrez, Aldo Bolado dejó de ser el director técnico de Huracán Las Heras 🎈 pero seguirá ligado al club tras un acuerdo con la dirigencia para ser coordinador de fútbol en las juveniles ⚽️ 👥 Su cargo como entrenador lo volverá a ocupar el joven Abdo #Alí y su equipo. Que en su interinato cosechó 4 pts de 6 posibles incluyendo un triunfo ante el líder. 👉🏽 Bolado estará a cargo a partir de ahora del proyecto de juveniles “Huracan hacia el futuro 24-28” que consta de competir en AFA. #HuracanLasHeras #HLH #AldoBolado #Huracan

6/1/2024, 2:34:40 AM

I’ve learned a lot since the hospital. Here are a few of them.⁠ ⁠ They’ve come from my low points and high points along the way.⁠ ⁠ I hope some of them can serve you.⁠ ⁠ Jared⁠ P.S. If any of them resonated, share the post 👊🏼

5/30/2024, 8:28:33 PM

Liebe Freunde von Hennig Systems, das Baby einer Freundin ist schwer erkrankt. Die kleine Anna ist erst 10 Monate alt und hat bereits viele schwierige Monate hinter sich. Nun kam die schlimme Diagnose: HLH – hämophagozytische Lymphohistiozytose. Diese seltene Erkrankung führt zu schweren immunologischen Störungen bei Säuglingen und Kleinkindern. Die Behandlung erfordert Chemotherapie und in vielen Fällen eine hämatopoetische Stammzelltransplantation. Anna hat die Chemotherapie bereits begonnen, aber jetzt brauchen wir dringend passende Stammzellen für sie. Hier könnt ihr helfen: Kommt am Montag, den 03.06.2024, zwischen 16 und 20 Uhr ins Autohaus Schneider in Ismaning. Ein einfacher Speicheltest kann Leben retten! Lasst uns gemeinsam Anna und vielen anderen in Not helfen. Eure Teilnahme kann einen großen Unterschied machen. Bitte erscheint zahlreich und lasst euch testen – jede Hilfe zählt! 🙏🏽 Vielen Dank für eure Unterstützung! ❤️ #HennigSystems #Stammzellspende #Lebensretter #GemeinsamFürAnna #HLH #registrierungsaktion #typisierungsaktion #ismaning #marktschwaben

5/30/2024, 2:46:09 PM

Quando si parla di percorsi di ricerca e di cure l’aiuto di esperti del settore è fondamentale. 🩺 AILE lo sa bene, ed è per questo motivo che si è affidata ad un comitato scientifico d’eccellenza, formato da medici e ricercatori specializzati nelle sindromi istiocitarie. Per saperne di più vai al link in descrizione! #comitatoscientifico #ricerca #progresso #malattiegeneticherare #hlh #insiemecontroHLH

5/30/2024, 2:30:05 PM

It would appear that there is a problem with messenger not letting us access messages coming through our business page that have been sent. If you have messaged us and not had a reply, please drop us a text message or give us a call on 07593234194 and we will assist. Unfortunately this is something out of our control however hopefully will be resolved soon! Thank you #YourOneStopRemovalsShop #RemovalsNorthDevon #Bideford #HLH

5/30/2024, 9:17:18 AM

At the street-facing entrance, Upalit and you meet formally. Ascending the stairs, you’re surrounded by green vines and branches that filter your thoughts. The sun shines quietly as you stroll from the garden inside. A low wall and bar structure make the space interesting, while distinctive windows witness the passage of time. The space has a sense of mystery, with quiet, elegant areas guided by light. Comfort comes from nature, and so does the space. Upalit expresses a love for nature, blending solid wood and textures. Sunrises and sunsets offer a way to connect with the inner self. Design here is about life and people’s feelings, not just space. Images: @threeimages #lamaisoncoromandel #interior #interiør #restaurant #wabisabi #upalit #hlh #shousugiban #minimalism #naturalinterior

5/30/2024, 5:48:27 AM

Looking for support? Spring is a time for new hope and we are always here for you.💜 Take a look at our meeting schedule and for more information, please visit hlhgrief.org #buildinghope #healinghearts #HLH #griefjourney #supportmeetings

5/29/2024, 4:04:10 PM

Thank you, Fleet Feet, for your sponsorship!! Join us!! Visit 5ktoFightHistio.org! Together we can move mountains! 💙🏃 #5KtoFightHistio #VisitCos #LiamsLighthouse #LLF #HLH #LCH #5ktoFightHistioSponsor #FleetFeet

5/28/2024, 5:00:16 PM

*EN👇*Excelentes noticias desde el @hbellvitge para los #Histioguerreros en toda España y en el mundo. El equipo del Dr. Xavier Solanich junto con la médica Gemma Rocamora lanzan un REGISTRO NACIONAL DE PACIENTES afectados por todo tipo de desordenes Histiociticos. #LCH #ECD #RDD #PLCH #HLH “El registro permitirá recopilar datos relevantes sobre los pacientes españoles con histiocitosis, incluyendo información sobre la evolución de la enfermedad, la respuesta a los tratamientos y otros factores clínicos relevantes”, Gemma Rocamora. Este registro también facilitará la colaboración entre centros especializados y la investigación en red. En @orasociacion hace más de dos años que venimos colaborando con este equipo del Dr. Solanich. Aportamos los fondos para que los miembros de su equipo participen en congresos Internacionales sobre #Histiocitosis. También financiamos sus cuotas de miembros a la #histiocytesociety, grupo Internacional que aúna a médicos especialistas e investigadores en Histiocitosis. Grandes noticias para todos los HISTIOGUERREROS. Excellent news from @Hbellvitge for #histiofigthe throughout Spain and in the world. Dr. Xavier Solanich's team together with the Internist Gemma Rocamora launch a NATIONAL REGISTRY OF PATIENTS affected by all types of histiocytic disorders. #Lch #ecd #RDD #PLCH #HLH "The registration will allow to collect relevant data on Spanish patients with histiocytosis, including information on the evolution of the disease, the response to treatments and other relevant clinical factors", says Rocammora. This registration will also facilitate collaboration between specialized centers and research network. In @orasociacion for more than two years ago we have been collaborating with this team of Dr. Solanich. We contribute funding their connection and participation in international congresses on #histiocytosis. We also finance their membership to the #Histiocytesociety. #registropacientes #globalhistio #patientadvocacy #histiocytosis #cáncer #barcelona #bellvitge #spain #españa #medicinainterna #salud #asociaciones #orasociacion

5/28/2024, 1:50:35 PM

MEET RECAP! I left the hospital on May 1st, 2023 after surviving HLH. A little over a year later, I took the powerlifting platform again. Even being such a significant milestone, my main intention for this meet was to have fun. That said, I’m still me. I set a goal to at least go 7/9 and take a swing at a 500 lb deadlift in competition. We ended the day 9/9, with 27 white lights, an all-time PR 501 deadlift and beat my previous best DOTS score. I say “we” here on purpose. I wouldn’t be here without the help of many incredible people. Like my wife Ashley who held it down as a single parent for months while I was out. Who cared for me at my most vulnerable points. Who’s cared for my wounds, physically and emotionally. I love you more than words can say. Or my parents, who dropped everything and came running when I got sick. Who advocated for me and prayed unceasingly through it all. I love you both so much. My care team at Grand River Hospital. You saved my life and helped me get strong enough to get home to my family. I’ll never be able to say thank you enough. @john.rebuild_stronger who stepped in to save the day and take care of my clients when I went down. Who’s been a mentor, partner, coach and brother to me in an absurd number of ways at this point. Love you, dude. @discovering_strength who took the reins when all I could do was sit-to-stands and yellow band exercises. Thank you for being an incredible man, team member, coach and friend. @thekocollective for being an incredible friend and handler for this comeback meet. @frank_benedetto and @cedric.j.haddad for going above and beyond what mentors do to take care of me and my family. You play irreplaceable roles in my life. Thank you. Every client who’s trusted me to support them before, during and since the hospital. Every family member, friend and person I’ve never met who supported me & my family. (Cont’d in comments) Squats: 152.5 kg / 336.2 lbs 162.5 kg / 358.2 lbs 172.5 kg / 380.3 lbs Bench: 100 kg / 220.5 lbs 105 kg / 231.5 lbs 112.5 kg / 248 lbs Deadlift: 205 kg / 451.9 lbs 217.5 kg / 479.5 lbs 227.5 kg / 501.5 lbs DOTS: 347.6

5/27/2024, 5:41:27 PM

Hemophagocytic Lymphohistiocytosis 1 | ASH Image Bank | American Society of Hematology HLH is inherited (familial HLH) about 25% of the time, while the remainder of the cases are believed to occur sporadically. Familial HLH is inherited in an autosomal recessive manner, most often associated with parental consanguinity. Currently, five main loci for the mutated HLH genes are known: FHL1 resulting from an unclear genetic defect FHL2 resulting from a mutated PRF1 gene that codes for perforin FHL3 resulting from a mutated UNC13D gene that codes for Munc13-4 (protein involved in cytolytic granule maturation) FHL4 resulting from a mutated STX11 gene that codes for syntaxin 11 (protein controlling granule exocytosis), FHL5 resulting from a mutated STXBP2 gene that codes for Munc18-2 (protein involved in cytotoxic granule release) Hemophagocytic lymphohistiocytosis (HLH) is diagnosed when a patient has at least five of the following eight criteria: 1.Fever: Greater than or equal to 38.5°C 2.Splenomegaly: Enlarged spleen 3.Cytopenia: Decreased number of certain blood cells, affecting at least two of three lineages in peripheral blood 4.Hypertriglyceridemia: Fasting triglycerides greater than or equal to 3.0 mmol/L (>265 mg/dL) or greater than three standard deviations above the normal value for age 5.Hypofibrinogenemia: Fibrinogen less than or equal to 1.5 g/L or greater than three standard deviations below the normal value for age 6.Hemophagocytosis: Presence of hemophagocytosis in bone marrow, spleen, lymph nodes, liver, or other tissues 7.Low or absent NK cell activity: Decreased or absent natural killer (NK) cell killing activity 8.Elevated soluble CD25 (soluble IL-2 receptor alpha): Greater than or equal to 2400 U/mL or two standard deviations above age-adjusted laboratory-specific norms Patients may also be included if they have genetic defects known to cause HLH #hemophagocytic Lymphohistiocytosis #hlh #hemophagocytosis #drvandanapathology #neetss #hematology

5/27/2024, 3:40:40 PM

La battaglia contro la HLH non è mai facile e non sempre ha un lieto fine. 💔 La storia della piccola Anna ci fa capire quanto è importante sostenere la ricerca per dare speranza alle famiglie che si trovano a dover affrontare una diagnosi di HLH. Leggi le parole di mamma Erica al link in descrizione! . . . #storie #raccontare #hlh #malattierare #AILE #insiemecontrolahlh"

5/27/2024, 3:00:36 PM

Grateful. So damn grateful. More thoughts and reflections to come but for now, I’m so grateful. If you’ve supported me and my family in any way this past year, this one’s for you too. Special thanks to @freebirdgym for running a great meet for me to make my return in! And huge thanks to all the refs, platform crew, volunteers and @wrpf_canada @wrpfontario who made the day possible. We are so back. P.S. peep the perfect shirt that @thesnkrheadphysio gifted me at the end 🤘🏼💀

5/26/2024, 9:54:46 PM

⏳️ ČAS ⌛️ Pro doktory je Artur záhadou. Není zdokumentovaý žádný případ HLH syndromu, který by sednul v takovém rozsahu na plíce. Takže se rozhodli začít znovu. Oslovili další tři expertní patology, aby udělali nezávislý posudek toho odebraného vzorku plíce. Áťův případ řešili na celostátním onkologickém konziliu. Zkontaktovali kliniky v zahraničí. A shodli se, že stopnou biologika a nasadí vysoké dávky kortikoidů 💊 Ty nám dají čas, než budou hotové další testy včetně genového sekvenování 🧬 To je nová metoda genetického testování, komplexnější a detailnější. Výsledky bychom měli mít za 2 měsíce. Odpoví nám na otázku, jestli krom jedné známé mutace genu spojeného s HLH nemá Áťa ještě nějaký další genetický problém. V úterý musel být celý den i noc na kyslíku, pak dostal Prednison (kortikoid) a od čtvrtka dýchá úplně sám 🙏 Na víkend nás dokonce pustili domů ❤️ Připadám si jak na horské dráze. Zadržet dech, chvíle na omdlení, zvednutý žaludek, fičák dolů, řev a strach, a pak oddechnutí a fííí chvilka klidu cestou nahoru. A pak celé znova. Zas a zas. #hlhsurvivor #hlh #hlhsyndrom #hemofagocytujicilymfohistiocytoza #crohnovachoroba #crohn #ibd #ulceroznikolitida #detskanemocnicebrno #zivotvnemocnici #onkologie #kortikoidy #biologickalecba #genetika

5/25/2024, 7:11:17 PM

These beauties are all still available in the garden centre! Come stop by! #hlh #shoplocal #hayduklumber #calmar #yeg #edmonton #beaumont #leduc #devon #draytonvalley #wizardlake #pigeonlake #breton #warburg #thorsby #diy #castlebuildingcentre #greenhouse #gardencentre #garden @castlebldggroup

5/24/2024, 10:15:23 PM

☀️☀️Absolutely cracking day today! ☀️☀️ Had the pleasure of returning some furniture for a client who has been in storage since October and what a stunning transformation within the property! www.hlhremovals.co.uk #YourOneStopRemovalsShop #RemovalsNorthDevon #Bideford #HLH

5/24/2024, 5:43:36 PM

La terapia genica diventa sempre più precisa. 🧬 Nuovi approcci di ingegneria genomica promettono di rivoluzionare i protocolli di cura per una risoluzione rapida e definitiva della HLH familiare. Scopri di più sullo studio al link in descrizione! . . . #hlh #ricerca #progresso #ricercamedica #ricercascientifica #scienza #malattierare #AILE #malattierare

5/24/2024, 3:30:16 PM

Lutando contra uma doença rara, em busca da cura. Meu exemplo de força, mamãe admira muito essa mocinha valente. ❤️ #linfohistiocitosishemofagocítica #hlh

5/24/2024, 1:15:10 AM

Thank you, Fyzical Therapy and Balance Centers, for your sponsorship!! Join us!! Visit 5ktoFightHistio.org! Together we can move mountains! 💙🏃 #5KtoFightHistio #VisitCos #LiamsLighthouse #LLF #HLH #LCH #5ktoFightHistioSponsor #fyzicaltherapyandbalancenters

5/23/2024, 5:00:10 PM

Looking to build a deck? WE CAN HELP! Spruce, pressure treated, composite decking… we carry it all! Railings? No problem! Metal, wood, glass, cable… we can help with that too! Call today! #hlh #shoplocal #hayduklumber #calmar #yeg #edmonton #beaumont #leduc #devon #draytonvalley #wizardlake #pigeonlake #breton #warburg #thorsby #diy #castlebuildingcentre @castlebldggroup @centuryrailings

5/23/2024, 4:19:12 PM

Wow what a busy week we have had here at HLH! We started off the week moving the last few bits out of storage and up to Blackpool for a lovely couple. It’s been a pleasure to be part of their journey to getting them back closer to their family! Contact us today to see how we can assist you with your next move! 📞01237418428📱07593234194 www.hlhremovals.co.uk #YourOneStopRemovalsShop #RemovalsNorthDevon #Bideford #HLH

5/23/2024, 1:44:56 PM

Looking for support? Spring is a time for new hope and we are always here for you.💜 Take a look at our May meeting schedule and for more information, please visit hlhgrief.org #buildinghope #healinghearts #HLH #griefjourney #supportmeetings

5/22/2024, 9:00:18 PM

Conosci la storia di AILE? 💚 AILE nasce nel 2015 su iniziativa della famiglia e degli amici di Mario Ricciardi, colpito dalla HLH a soli 14 anni. Dopo la sua scomparsa, il papà, Ugo, fonda l’Associazione Italiana Linfoistiocitosi Emofagocitica con lo scopo di aiutare le famiglie che affrontano questa malattia e per sostenere la ricerca scientifica al fine di trovare, in un futuro non molto lontano, nuove cure per la HLH. Per scoprire di più sull’associazione segui il link in descrizione e visita il nostro sito! #LinfoistiocitosiEmofagocitica #HLH #AILE #malattierare #sostegno #ricerca

5/22/2024, 3:00:21 PM

Definitely didn't think I'd get this far. Thought I'd always be a fat donut. (Or at least feel like it) TRUST THE PROCESS #notdoneyet #hlh #canthurtme #dreamchaser #femalebodybuilder #femalemarine

5/22/2024, 12:41:10 PM

Who are we building for? Who will live here? Find out tomorrow!! #harrows_leap #harrowsleaphorsemanship #hlh #homesteading #homestead #stuartvirginia #stuartva #patrickcounty #patrickcountyva

5/21/2024, 11:45:01 PM

Thank you, The Frank Caruso Golf Tournament, for your sponsorship!! Join us!! Visit 5ktoFightHistio.org! Together we can move mountains! 💙🏃 #5KtoFightHistio #VisitCos #LiamsLighthouse #LLF #HLH #LCH #5ktoFightHistioSponsor #TheFrankCarusoGolfTournament

5/21/2024, 5:00:32 PM

🛟 MÍRUMILOVNÝ ⛵️ Dnes je to přesně půl roku od nejhoršího dne našeho života. Doufali jsme, že už to bude všechno za námi, ale karty zjevně rozdává někdo jiný 🤷🏻‍♀️ Ráno Arťula bezvadně zvládnul cétéčko, čímž asi končí dnešní porce dobrých zpráv 🙈 Nález na plicích se zhoršil natolik, že když jsme na ty snímky s Lukášem koukali jako naprostí laici, málem nás jeblo. Takže uííí na zdejší Hilton oddělení alias JIP 7. Megaodběry, na pusu nasadit nonstop kyslík a za hodinu první aplikace Anakinry, což je první ze tří biologik, která teď Arťa bude dostávat. Je to pidiinjekce do podkoží, dává se denně a budeme to smět aplikovat i sami doma, uf 🙄 Druhý lék, Infliximab, který cílí na pana Crohna, začneme ve čtvrtek. A příští týden by měl do Česka doputovat zlatý hřeb našeho léčebného protokolu, Gamifant. Společně s Anakinrou (jasně, že už jim říkáme Anakin a Gandalf 🧙‍♂️) by měl cca během měsíce zkrotit HLH. Když jsme dorazili na náš nový pokojík, Arťa byl úplně nadšený. "Modrý! To je moje oblíbená barva! Působí tak mírumilovně." 💙 A ano, taháme teď s sebou všude novou školní aktovku, kterou naprosto zbožňuje. #hlh #hlhsyndrom #hemofagocytujicilymfohistiocytoza #relaps #onkologie #biologickalecba #crohnovachoroba #crohn #ibd #ulceroznikolitida #anakinra #gamifant #infliximab #detskanemocnicebrno

5/20/2024, 8:24:34 PM

💙 Please join us in welcoming Team Liam!! 💙 Team Liam is joining us from Colorado Springs! To learn more about Team Liam, join the team or make a donation visit their race page: https://raceroster.com/events/2024/82940/5k-to-fight-histio/pledge/team/1 We are excited to announce all teams participating in the 2024 5k to Fight Histio! 👏👏 Teams will be fundraising until race day, together we can #movemountains !! #LiamsLighthouseFoundation #LLF #5ktoFightHistio #HLH #LCH #histio #TeamLiam

5/20/2024, 5:00:21 PM

Such a bittersweet day remembering Finn 💙 It’s hard to find the words so I will just simply say: thank you to everyone… it really means so much when you show up for Finny (and us) and help create new memories “with him” the only way we can… supporting this cause and rare disease are such a sweet bonus 🎗️ And for those donating and sending pics in from elsewhere 🥰🫶🫶!! @hlhheroesfoundation #raredisease #hlh

5/20/2024, 5:54:43 AM

Minha raridade. ❤️ #hlh

5/20/2024, 1:21:09 AM

Welcome to Harrow’s Leap Farm, our new home! Located in Patrick County, VA, close to the North Carolina border, in the foothills of the Blue Ridge Mountains. Future home of Harrow’s Leap Horsemanship! Follow for news, updates, and stories from the farm! #harrows_leap #hlh #harrowsleaphorsemanship #patrickcountyva #patrickcounty #stuartvirginia #homesteading

5/20/2024, 1:12:21 AM

FEDERAL A | FECHA 10 ✅ SE TRAJO UN PUNTO CON UNO MENOS En su visita a San Luis 🏟️, Huracán Las Heras 🎈empató 1-1 ante Estudiantes de SL 🟢 por la fecha 10 del Torneo Federal A 🏆 ⚽️ Lo ganaba el local con un gol de Puliafito Sosa y lo igualó Nicolas Alí con uno menos por expulsión de Décimo minutos antes del empate 🟥 🆚 La próxima recibe a Gutierrez 📸 Prensa Huracán Las Heras #FederalA #HuracanLasHeras #Huracan #hlh

5/20/2024, 12:41:59 AM

Why 5K to Fight Histio? Your participation and support help us continue to bring Histiocytosis awareness and education to medical facilities, physicians, and patients around the world. We 5K for the future - one with fewer angels and only survivors! #LiamsLighthouse #5KtoFightHistio #LLF #LCH #HLH #movemountains #letsmovemountains #Why5KtoFightHistio #Histiocytosis

5/19/2024, 9:22:35 PM

Houses Like Hugs 🏘 • • • #HandsLikeHouses #HLH #Tropo #TheTropoTour

5/19/2024, 9:03:05 AM

LAST DAY to customize your team shirt is 5.24.24! Help us MOVE MOUNTAINS, Stronger Together! Visit 5ktoFightHistio.org!💙👟🗻🏃 #LLF #5kToFightHistio #liamslighthousefoundation #histio #HLH #LCH

5/19/2024, 12:00:35 AM

On National Speech and Language Pathologist Appreciation Day, we're honored to share Madison's inspiring journey. Join us in celebrating the incredible work of SLPs like Melissa Stone Mengistu who played a pivotal role in Madison's progress. Read Madison's story at the link in our bio! #SLPappreciation

5/18/2024, 7:00:19 PM

Thank you, HLH Heroes Foundation, for your sponsorship!! Join us!! Visit 5ktoFightHistio.org! Together we can move mountains! 💙🏃 #5KtoFightHistio #VisitCos #LiamsLighthouse #LLF #HLH #LCH #5ktoFightHistioSponsor #HLHHeroesFoundation @hlhheroesfoundation

5/18/2024, 5:00:31 PM

Hands Like Houses @handslikehouses Sat night on the last night of the TROPO tour this evening at Fun Time Pony @funtimepony #handslikehouses #hlh #funtimepony #cbr

5/18/2024, 4:49:27 PM