#Pompe Disease

[quirinah]

i! ro! ha!

[surkuted]

https://biiut.com/read-blog/59398

[roseaa11]

The global pompe disease treatment market is projected to witness significant growth during the forecast period. In U.S., projected occurrence are approximately 1 in 40,000 births. Males and females are equally affected by the diseases. Medical advancements that involves ongoing drug discovery, and government and non-government organizational initiatives are what that boosts the market growth.  

[b-does-the-write-thing]

general incivility, chapter four

                              - a brienne x jaime pride & prejudice retelling -

chapter one l chapter two  l chapter three l chapter four

The Stormlands were, like most of the families who had settled there, rather unremarkable. The rocky region lay nestled between the more wealthy Crownlands to the north and the more fertile Reach to the west. Most ever bothered to cross the mountain range that separated the regions, and to the south was nothing but the Dornish desert, as inhospitable as its people from what Septa Roelle had taught her. 

It was a rugged land, as large and sprawling, pitted and scarred as she was. It would never be considered beautiful but it was what it was. One either learned to love it or they hated it and Brienne had adopted the same practice to her own life. 

Many a day, Brienne went riding. Usually to train, but other days, just as an excuse to stretch her legs and clear her mind. But today, fresh from a wash after her morning bout with the Colonel, Brienne set out on the path towards the closet manor home, Storm’s End, to pay a call upon her most intimate of friends—her only friend to speak plainly. 

Storm’s End was perched upon Durran’s Point, the southernmost stop of the King’s Road. Here, the elder of King Robert’s younger brothers had made his home nearly a decade ago now. Brienne had been too young to attend but her father had told her stories of the great retinue that had arrived with Stannis Baratheon and his young wife and how all of the Stormlands had celebrated for seven days straight before King Robert had returned north to his iron throne. 

If the people of the Stormlands had hoped for a lively royal in their midst, they were sadly disappointed. Stannis Baratheon lacked the love of pomp and party that his two brothers had inherited, preferring the solemn and dreary coasts of Storm’s End to the other manors he may have claimed for his own as the King’s brother and heir. 

As they arrived at the manor’s gates, Septa Roelle turned her nose up. “Oh, Lady Selyse is at home,” she remarked in the same tone she pointed out mice droppings. Septa Roelle liked few people but she actively disliked even fewer, but somehow Lady Selyse Baratheon had never risen high in the Septa's mind. 

The Bartheons only had the one daughter, an intelligent, sweet young debutant of fifteen who though Brienne's junior, was more mature than any of the other ladies in the region.  She was also, like Brienne, no stranger to cruelty at the sake of her appearance.

As tall and thin as both her parents, Shireen had the Baratheon bold blue eyes and the equally strong, jutting jaw which may have made her handsome if not partnered with her mother’s large ears and aquiline nose. 

Fate had taken a hand in Shireen’s appearance as well. While still in the cradle, Shireen had been afflicted with grayscale. While she had recovered, she had been left with gray and black mottled scars all across her left cheek and down to her neck. 

The more superstitious families avoided the Baratheons, believing the disease lay dormant in the skin and could be reawoken with a single sneeze. Folly, according to all the maesters but still even the more opportunistic fortune hunters steered clear of the young Lady Baratheon. Septa Roelle had also been conflicted. On the one hand, her charge rubbing elbows with royalty, and on the other, a disease so deadly that its mere name was considered dangerous.

Thankfully, royal blood, diseased or not, won out in the end, and the two unfortunates became fast friends. Shireen liked the loyal and true Brienne Tarth, finding her refreshing and more intelligent than any of the other ladies her mother tried to foster upon her, while Brienne liked the quiet solitude of Shireen’s company. Shireen never stared or ogled or winced and, on numerous occasions, put herself pointedly between Brienne and her tormentors at assemblies so no one would jokingly ask Brienne the Beauty for a dance. 

Shireen had been in attendance at the assembly though her mother had kept her occupied with both Lannister brothers. “Brienne tells me you were the first to dance with Mr. Lannister,” Septa Roelle praised Shireen as they all sat down in the sitting room over a cup of tea. 

Lady Baratheon beamed at the accomplishment, but Shireen was quick to deflect any praise. “Yes, but he danced with nearly every lady present. Though, he did ask after you, Brienne.”

Septa Roelle perked up at this. “Oh?”

“Yes, but it was later in the evening, and poor Mr. Tarth had already called for the chaise. Mr. Lannister did seem rather disappointed.”

“My departure, if truly noticed, was nothing but a slight inconvenience, if that.” Brienne insisted lest Septa Roelle get the wrong idea. 

“Oh, but he was most sincere,” Shireen protested. “He mentioned you had spoken for a moment and while he was rudely whisked away, he had great hopes of the two of you finishing the conversation before the night came to an end.”

“I dare say he’ll have to get used to disappointment,” Brienne murmured into her cup. 

Shireen heard it and gave her a knowing smile, but Septa Roelle had already moved on to the next eligible bachelor. “Is there any truth to this rumor that the elder Lannister is set to marry the cousin that was in attendance?” 

“It was obvious to even that blind old bat Whent,” Lady Baratheon confirmed. “Ms. Lannister did deign to dance with some of the local gentlemen but never more than once. As for the Lion of Lannister, he was most disagreeable. I was in his company for nearly the entire evening, and he barely uttered a word. Most unfortunate. Good breeding does not always result in good manners.” 

Brienne could only imagine what Jaime Lannister had thought of Selyse Baratheon shadowing his every move. His unpleasant mood became less of a mystery. 

“The youngest Mr. Lannister told me his brother is not much for conversation among strangers but is a remarkably agreeable fellow among his intimate acquaintances,” Shireen contributed.

“Simply making excuses for his family,” her mother replied. “It was clear to the whole assembly that he is a sinfully prideful man. Comely or not, I’ll be happy to see the back of him.” 

“I do not see why he should not be proud. He is the most handsome man I have ever seen, and his family is reported to have more wealth than even Uncle Robert’s treasury. If our roles were reversed, I would surely be proud, wouldn’t you, mother?”

Selyse Baratheon bristled at the suggestion. “I certainly would not. I am not so vain as that, child!”

“Vanity is something different entirely,” Septa Roelle corrected. “A person may be proud without being vain. Pride is our opinion of oneself; vanity is what we would have others think.”

The two older women soon fell into debate on the subject, with Septa Roelle taking the high ground of her faith and Lady Baratheon that of her education.  Shireen scooted closer under the guise of rearranging her skirts. “All this talk of pride and vanity, but you never said, what did you think of Mr. Tyrion Lannister, my dear Brienne?”

Ensuring Septa Roelle was caught up in the debate, she confessed, “I found him to be an odd sort of fellow.”

“How so?”

Brienne shared what she had overheard, speaking low so as not to be overheard. By the end, Shireen was clearly amused. “He ought not to have said those things,” she conceded, though it was unclear if she was speaking of the younger or elder Lannister.

“It was not gentleman-like,” Brienne conceded,” but neither of them were wrong.”

Shireen lay her hand upon Brienne’s to administer a gentle squeeze. “You are too kind to others and much too hard on yourself,” she admonished. 

“Careful, lest you make me too vain of my so-called good nature,” Brienne teased.

“Never. I can only attempt to make you proud of it,” Shireen rallied back.

“Girls? What are you two whispering about?” Septa Roelle demanded. They quickly echoed platitudes about the weather and the rest of the visit was spent discussing the health of Lady Whent. 

--- Just some general story establishing today, folks. Next chapter, everyone is back.

[aceofcupsbiggestfan]

Dionysia ta Megala

~ 10-17 Elaphebolion ~

Dionysia ta Megala translated to Greater Dionysia (or Dionysia ta astika/City Dionysia), was the second most important Dionysian Festival of the year.

City Dionysia celebrated the end of winter, as well as the crop harvest of the year. Nearing around the Spring Equinox, you can also celebrate as a welcoming of spring.

The festival has it origins in Eleutherea, a town north of Attica. A myth came about that when the Athenians rejected the Dionysian cult, he cast upon the men a disease on their genitals.

This lead to the Athenians hosting Dionysia ta Megala, as honoring Dionysus after their misfalling. Because of this particpants carried a large phallus across the polis durng Dionysia.

Several things were done every City Dionysia. Starting with the pompe, citizens continued with komos after.

Modern Hellenes can celebrate City Dionysia by following the pompe and the komos.

Plan your own route to walk, talking time to celebrate Dionysus by carrying a statue or a reminder of him.

Find a City Dionysia festival or group to join! Sing loudly and go out with friends to raucous parties. Have a feast, holding a space for Dionysus. Watch theatre, whether modern or ancient and sing hymns!

Traditional Offerings:

-phallus shaped objects

-oboloi

-wine

-water

-statues of Dionysus

Traditional Acts:

-party

-sing hymns

-hold a feast

-watch plays

-drink wine

-parade through the streets

-role-reversing

Khaire Dionysus! 🐆🍷🍇

[masshu-art]

Not finished yet but in time I ran out of paint 🎨 🤣 but the start of Leo's room whilst he's in Claire house pretty happy with the look so far inspiration from Leo's first book I illustrated and wrote the floppy slothy :)

https://pompe.uk/publications-library/leo-and-the-floppy-sloth want to do something amazing this year by even sharing this it's spreads the word about infantile pompe disease a disease that has no cure and uncertain. This book is a child friendly positive life experience I share with my son who's fighting infantile pompe disease if you wish to donate to this charity or even share to spread the awareness maybe one day we will have a cure #cure #pompe #infantile #nhs #lifelimiting #awareness #health #donate #share #facebookviral

[brinefathomcaves]

Nov 9: The Wheel of Fortune

The walls of this chamber are hung with banners depicting humanoid body parts: Eyeballs, skinless hands, anatomical hearts. The banners are always moist. On the raised platform, 10’ of stairs above the rest of the room, a flayed humanoid corpse is nailed to a wheel. Once per day, a creature can spin the wheel to receive the following:

d10

Disgust: Gain one level of exhaustion as the corpse spits in your face.

Confusion: Be under the effect of the confusion spell during the first round (and surprise round, if applicable) of each combat for the next 24 hours.

Ridicule: The corpse looks the creature in the eye and laughs. No game effect.

Pomp: A dramatic puff of sulfurous smoke, after which nothing happens. No game effect.

Betrayal: Grow devil horns, cloven hooves, or another signifier of an infernal nature. No game effect.

Foresight: For the next week, gain the ability to cast augury once a day.

Quiet: For the next week, gain the ability to cast silence once a day.

Vision: Gain the ability to see 120’ normally  in mundane and magical darkness for 24 hours.

Fortitude: Gain resistance to cold and fire damage for 24 hours.

Vigor: Immediately healed to full health. All diseases, poisons, and curses on the creature are cured.

If the corpse is removed from the wheel, it crumbles to dust, and spinning the wheel has no effect until another corpse is skinned and nailed on.

[percontaion-points]

The Emperor's Omega chapters 1 & 2

Click here for the rest of the series!

Click to see the rest of the snark & image descriptions

Chapter 1

“We still wish very much to solidify the alliance between our nations. The princess’s younger brother, Prince Suriya, is unwed, and an omega. We offer him instead.”

I don’t know what I was expecting. It’s literally in the title.

Kenosi ran his thumb over the raised seal. A bear stood in profile, both paws raised. Dharani’s [the older sister who died] seal had been similar, only her bear roared, and this bear turned its head coyly to the side, as if it had a secret.

We get it: he’s a fruity bottom. Let’s move on.

The horses quickly vanished in the daily traffic of the city, people coming and going to market or to work, and Kenosi turned and led his guards back into the palace. There was much to be done.

Chapter 1 summary: We’re introduced to the titular emperor, Kenosi. He receives a delegation from the neighbouring kingdom, but it’s not good news. The princess that Kenosi was engaged to passed away after a month-long battle with a wasting disease. Since that’s obviously now off the table, and the kingdom is desperate, they offer up their prince, who is an omega. Kenosi needs to be married, and the other kingdom needs this alliance, so Kenosi agrees. The ambassador talks up Prince Suriya, and then gives Kenosi a letter Suriya had sent along. After reading it, Kenosi goes to visit his mother, who is also suffering from a wasting disease. He tells her about all of this. His mother is mainly impressed at how desperate that their neighbours must be in order to offer up what she describes as a precious and sheltered omega. Kenosi writes a letter in response to Suriya, as well as a courtship poem, and gives it to the ambassador to take back to the prince.

Chapter 2

But until that happened, for as long as he could, he would do what he needed to secure this alliance for his people.

Chapter 2 summary: Kenosi is anxious for the arrival of the caravan containing his betrothed. Mainly because he’s an only child, and without having an heir, his country could descend into civil war upon his passing as his cousins fight for the throne. When the group finally shows up, they all meet in the grand meeting hall, although Kenosi is disappointed that Suriya is wearing a veil to hide his face. After the usual pomp and circumstance surrounding a meeting of two kingdoms, Kenosi asks to speak to Suriya for a moment. Suriya approaches, and takes his veil off upon Kenosi’s request. Both men are rather taken by the physical appearance of the other. They talk about riding, which is the favourite pastime of Suriya. Later, Suriya cannot stop thinking about their meeting, however brief it might have been. He’s shown to two suits, and asked to choose between them. Except the entire thing feels like a test, because one room is light and airy, with windows that overlook the gardens. The other has no windows at all. Suriya feels like all of the furniture is odd and foreign, and marvels over it. He’s also anxious for this marriage to work out.

Hire me to fix your book! Copyediting, proofreading, developmental editing, sarcastic editing, and more! 16 years of book-editing experience. Message me anywhere for pricing and further details.

[eliotrosechild]

Pigeon Pomp

The park and bus platforms are, at midday, same

as a walk by the seaboard rushed with breeze,

or the cranny grandstands hours after a game.

There, where hunger begets the fever for seed,

you find my head, sullen, with social ease,

chomping, stomping, pigeon pomping through need.

Man asks Pigeon: How does pomping suit your need?

Pigeon tells Man: Suits are pompous, needs are same.

You and we, bound by blood, cloaked with disease,

envy and pride, form graceless chords to the breeze,

mar the tokens of Regality’s seed,

and rake life’s contract with our pompous game.

By our sails, we are greatness in sport, a game

we love and hate. We fly and fie by need.

We take by want. We rape to spread our seed.

Dear murderous man, our pomp suits you the same.

Yet we are innocent when we yield to the breeze,

Juxtaposed, fat bellies of crumb fed ease.

If these pigeon thoughts offend your Gentle ease,

perhaps you ignore the pomp of man’s game,

where pride, envy and other chords hang the breeze:

man wakes to tame the day, anticipates need

and takes without remorse or shame. This same

taking is as common to hand as beak to seed.

We come to the ripe ground to eat the seed

en masse. Tireless at work, but sporting an ease,

in Congress we hoot, peck, hoot. While sesame

slips from our tongues, we’re coy to rethink this game—

“Could life, without competing, unscratch our need?”—

but the words taste dry as cotton-curled breeze.

Will we forever fly in a waking breeze?

Will we yield to the best the ripest seed?

Are we damned to hoot and peck the pomp of need?

An unsettled beak and neck finds no ease

competing in an uncompleting game:

these pompous virtues make man and pigeon, same.

At ease, my sweet, fat, pigeon man, you need

the man-bird to study its game and learn, same

as I, how pompous seed breeds a foul breeze.

[wolfcake101]

uhh facts about baldi's basics ms wc i should probably mention

i call her bbieal ms wc as to not cause confusion with myself. she goes by Wolfie though

she is made of plastic! she is 3d printed. thats why she's 3d sometimes. though most of the time i draw her 2d because its less time consuming

she IS diseased, but not contagious

those fun splotches on her are paint

she is 15 years old

mrs. pomp absolutely terrifies her

as you already know she looks up to dr. reflex a lot and likes to follow him around when possible

she ends up having to see dr. reflex a LOT because of how ill she is

also those marks on her are bruises

she likes drawing a lot!!

[lauvra]

The Progress of Poesy: A Pindaric Ode by Thomas Gray

I.1.

         Awake, Æolian lyre, awake, And give to rapture all thy trembling strings. From Helicon's harmonious springs A thousand rills their mazy progress take: The laughing flowers, that round them blow, Drink life and fragrance as they flow. Now the rich stream of music winds along Deep, majestic, smooth, and strong, Thro' verdant vales, and Ceres' golden reign: Now rolling down the steep amain, Headlong, impetuous, see it pour: The rocks and nodding groves rebellow to the roar.

I.2.

         Oh! Sovereign of the willing soul, Parent of sweet and solemn-breathing airs, Enchanting shell! the sullen Cares And frantic Passions hear thy soft control. On Thracia's hills the Lord of War, Has curb'd the fury of his car, And dropp'd his thirsty lance at thy command. Perching on the sceptred hand Of Jove, thy magic lulls the feather'd king With ruffled plumes and flagging wing: Quench'd in dark clouds of slumber lie The terror of his beak, and light'nings of his eye.

I.3.

         Thee the voice, the dance, obey, Temper'd to thy warbled lay. O'er Idalia's velvet-green The rosy-crowned Loves are seen On Cytherea's day With antic Sports and blue-ey'd Pleasures, Frisking light in frolic measures; Now pursuing, now retreating, Now in circling troops they meet: To brisk notes in cadence beating Glance their many-twinkling feet. Slow melting strains their Queen's approach declare: Where'er she turns the Graces homage pay. With arms sublime, that float upon the air, In gliding state she wins her easy way: O'er her warm cheek and rising bosom move The bloom of young Desire and purple light of Love.

II.1.

         Man's feeble race what ills await, Labour, and Penury, the racks of Pain, Disease, and Sorrow's weeping train, And Death, sad refuge from the storms of Fate! The fond complaint, my song, disprove, And justify the laws of Jove. Say, has he giv'n in vain the heav'nly Muse? Night, and all her sickly dews, Her spectres wan, and birds of boding cry, He gives to range the dreary sky: Till down the eastern cliffs afar Hyperion's march they spy, and glitt'ring shafts of war.

II.2.

         In climes beyond the solar road, Where shaggy forms o'er ice-built mountains roam, The Muse has broke the twilight-gloom To cheer the shiv'ring native's dull abode. And oft, beneath the od'rous shade Of Chili's boundless forests laid, She deigns to hear the savage youth repeat In loose numbers wildly sweet Their feather-cinctur'd chiefs, and dusky loves. Her track, where'er the goddess roves, Glory pursue, and generous Shame, Th' unconquerable Mind, and Freedom's holy flame.

II.3.

         Woods, that wave o'er Delphi's steep, Isles, that crown th' Ægean deep, Fields, that cool Ilissus laves, Or where Mæander's amber waves In ling'ring Lab'rinths creep, How do your tuneful echoes languish, Mute, but to the voice of Anguish? Where each old poetic mountain Inspiration breath'd around: Ev'ry shade and hallow'd Fountain Murmur'd deep a solemn sound: Till the sad Nine in Greece's evil hour Left their Parnassus for the Latian plains. Alike they scorn the pomp of tyrant Power, And coward Vice, that revels in her chains. When Latium had her lofty spirit lost, They sought, O Albion! next thy sea-encircled coast.

III.1.

         Far from the sun and summer-gale, In thy green lap was Nature's darling laid, What time, where lucid Avon stray'd, To him the mighty Mother did unveil Her awful face: the dauntless child Stretch'd forth his little arms, and smiled. This pencil take (she said) whose colours clear Richly paint the vernal year: Thine too these golden keys, immortal boy! This can unlock the gates of Joy; Of Horror that, and thrilling Fears, Or ope the sacred source of sympathetic tears.

III.2.

         Nor second he, that rode sublime Upon the seraph-wings of Ecstasy, The secrets of th' Abyss to spy. He pass'd the flaming bounds of Place and Time: The living throne, the sapphire-blaze, Where angels tremble, while they gaze, He saw; but blasted with excess of light, Clos'd his eyes in endless night. Behold, where Dryden's less presumptuous car, Wide o'er the fields of Glory bear Two coursers of ethereal race, With necks in thunder cloth'd, and long-resounding pace.

III.3.

         Hark, his hands thy lyre explore! Bright-eyed Fancy hovering o'er Scatters from her pictur'd urn Thoughts that breathe, and words that burn. But ah! 'tis heard no more— O lyre divine, what daring spirit Wakes thee now? tho' he inherit Nor the pride, nor ample pinion, That the Theban Eagle bear, Sailing with supreme dominion Thro' the azure deep of air: Yet oft before his infant eyes would run Such forms, as glitter in the Muse's ray With orient hues, unborrow'd of the Sun: Yet shall he mount, and keep his distant way Beyond the limits of a vulgar fate, Beneath the good how far—but far above the great.

[droughtofapathy]

"Welcome to the Theatre": Diary of a Broadway Baby

Mother Play

April 26, 2024 | Broadway | Hayes Theater | Evening | Play | Original | 1H 30M

I am now deeply, and unsurprisingly, in love with Jessica Lange. After so many new and disappointing musicals this month, being able to sit third-row in a smart, well-written, expertly-acted play with no pomp and circumstance is a relief. Written by Pulitzer Prize-winner Paula Vogel, the play examines her own childhood with a mother who should never have been a mother. Under Jessica Lange's masterful craft, Phyllis is part-Joan Crawford, part Mama Rose. Sympathetic and deplorable, enchanting and repulsive. A prime example of a woman who had motherhood forced on her, and tried to cope, but failed at every turn. Celia Keenan-Bolger, no stranger to embodying child roles as a grown woman, is the playwright's stand-in (here named Martha, not Paula) and carries the show's narrative with the same competence as the character has in packing up a house and moving out when the eviction notice comes. Jim Parsons, also a wonderful performer as Carl, the brother who doesn't survive. The three actors are so well-connected.

The show is comedy and tragedy. Morbid in the best way. The last scene, as a middle-aged Martha takes care of an elderly mother who no longer recognizes her, carried more power and nuance than the entirety of The Notebook's handling of the same disease. Vogel trusts her audience to still have an ounce of critical thought. The biggest example of this is in the play's subtle analysis of Phyllis's own sexuality. Her children, Martha and Carl, are very openly gay. Something that horrifies their mother, who slowly comes around (sort of) as the years pass, only to heartbreakingly not in the end. Martha, the narrator, never once comes out and says "I think my mother might've been a repressed lesbian," but that idea is woven into the entire piece. Phyllis, who is so tactile with her young son, but can't bear to touch her daughter, and who avoids any contact with women. In the end, old and senile, she is bathed by a daughter she thinks is just a nurse at the home. And as Martha drags a damp cloth over her mother's neck and collarbone, across her bare shoulder and down beneath the robe over her breasts, the relief and simple pleasure Phyllis gets out of this touch reveals more than any blatant statement. Jessica Lange's expressions in this moment are mesmerizing. And Celia Keenan-Bolger's just heartbreaking.

There's also something delightful in the way Phyllis, who starts the play at 37 and continues into her seventies, is allowed to visibly age. By the curtain call, Jessica Lange is onstage with her wrinkles and lines and bags visible for all to see, and I love a woman who is allowed to be old on stage.

Verdict: Why I Love the Theatre

A Note on Ratings

[qaisgaza1]

I am a weak and oppressed woman living in Gaza, struggling every day while everyone ignores my suffering. I have no income, no food, and no clothing. Please, I am desperate and willing to clean your shoes or do any work in exchange for any help you can offer. I just need to survive😭💔.

🚨 Urgent Help Needed 🚨

Hello friend 🍉🇵🇸,

I’m Esraa Mounes Al-Kafarna, a mother from Gaza. My youngest needs milk, and my other child requires treatment for a skin disease. The conflict has made survival extremely difficult 💔.

Your support can save their lives. Any donation, big or small, makes a difference.

Please donate and share: [https://gofund.me/e6cd83a9]

Thank you for your kindness.

Esraa Al-Kafarna

@polysdoitforscience

@pomeg-juice-and-rinds

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@puellaxun

The killing of children in Gaza is a heartbreaking tragedy that the world cannot ignore. Innocent lives are being lost every day due to relentless bombings and attacks. These children had dreams, hopes, and futures that were stolen from them in an instant. As a weak and oppressed woman in Gaza, I have no money and struggle to survive. I beg for your help to support my baby, Qais, who is not yet two years old. Any donation can save his life.

This crisis is alarming for several reasons:

1. High Child Mortality – Nearly half of the victims in Gaza are children, making this one of the deadliest conflicts for young lives.

2. Destruction of Families – Parents are left grieving, and many children are orphaned, with no one to care for them.

3. Long-Term Trauma – The surviving children face severe psychological scars, growing up in fear, pain, and deep emotional distress.

The international community must do more to stop this catastrophe. Immediate action is needed to end the violence, provide urgent humanitarian aid, and protect innocent lives. My baby, Qais, was just playing near our tent during Eid when an Israeli airstrike hit, leaving him injured. As his mother, I am devastated and helpless. I have no money to get him the medical treatment he desperately needs. Please, if you can, donate to help save his life and give him a chance to heal.

Donate now Here

Vetted by @gazavetters , my number verified on the list is ( #64 )🍉🇵🇸

[kadirtclk16]

My Father Moved Through Dooms Of Love

Edward Estlin Cummings

my father moved through dooms of love

through sames of am through haves of give,

singing each morning out of each night

my father moved through depths of height

this motionless forgetful where

turned at his glance to shining here;

that if(so timid air is firm)

under his eyes would stir and squirm

newly as from unburied which

floats the first who,his april touch

drove sleeping selves to swarm their fates

woke dreamers to their ghostly roots

and should some why completely weep

my father's fingers brought her sleep:

vainly no smallest voice might cry

for he could feel the mountains grow.

Lifting the valleys of the sea

my father moved through griefs of joy;

praising a forehead called the moon

singing desire into begin

joy was his song and joy so pure

a heart of star by him could steer

and pure so now and now so yes

the wrists of twilight would rejoice

keen as midsummer's keen beyond

conceiving mind of sun will stand,

so strictly(over utmost him

so hugely) stood my father's dream

his flesh was flesh his blood was blood:

no hungry man but wished him food;

no cripple wouldn't creep one mile

uphill to only see him smile.

Scorning the Pomp of must and shall

my father moved through dooms of feel;

his anger was as right as rain

his pity was as green as grain

septembering arms of year extend

yes humbly wealth to foe and friend

than he to foolish and to wise

offered immeasurable is

proudly and(by octobering flame

beckoned)as earth will downward climb,

so naked for immortal work

his shoulders marched against the dark

his sorrow was as true as bread:

no liar looked him in the head;

if every friend became his foe

he'd laugh and build a world with snow.

My father moved through theys of we,

singing each new leaf out of each tree

(and every child was sure that spring

danced when she heard my father sing)

then let men kill which cannot share,

let blood and flesh be mud and mire,

scheming imagine,passion willed,

freedom a drug that's bought and sold

giving to steal and cruel kind,

a heart to fear,to doubt a mind,

to differ a disease of same,

conform the pinnacle of am

though dull were all we taste as bright,

bitter all utterly things sweet,

maggoty minus and dumb death

all we inherit,all bequeath

and nothing quite so least as truth

--i say though hate were why men breathe--

because my Father lived his soul

love is the whole and more than all

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Which pharmaceutical companies in France are leading in rare disease research?

Advancements in Rare Disease Research: Leading Pharmaceutical Companies in France France has emerged as a global leader in rare disease research, driven by a combination of public health initiatives, academic-industry collaborations, and groundbreaking innovations from its pharmaceutical sector. With over 3 million individuals affected by rare diseases in the country, French companies have prioritized addressing diagnostic delays, therapeutic gaps, and accessibility challenges. This article explores the pharmaceutical firms at the forefront of this critical work, their scientific contributions, and the collaborative frameworks enabling progress.   The Landscape of Rare Diseases in France Rare diseases, defined as conditions affecting fewer than 1 in 2,000 individuals, represent a significant public health challenge in France. Approximately 7,000 rare diseases have been identified globally, 95% of which lack approved treatments. The French government has long recognized the urgency of this issue, launching its first National Plan for Rare Diseases in 2004. Subsequent plans have focused on reducing diagnostic delays—which average 2–3 years in France—and expanding research infrastructure. By 2023, the country established 23 national reference centers and over 400 centers of expertise dedicated to rare diseases1. These efforts have created a fertile environment for pharmaceutical innovation, particularly in gene therapy, artificial intelligence (AI)-driven diagnostics, and targeted biologics.   Leading Pharmaceutical Companies in Rare Disease Research Sanofi: Pioneering Therapies and AI-Driven Diagnostics Sanofi, one of France’s largest pharmaceutical companies, has been instrumental in advancing treatments for rare metabolic and genetic disorders. In 2023, the European Medicines Agency (EMA) approved avalglucosidase alfa, Sanofi’s enzyme replacement therapy for Pompe disease, a rare neuromuscular disorder affecting fewer than 1,000 individuals in France1. The drug improves motor function and respiratory capacity by addressing the underlying enzyme deficiency. Sanofi is also progressing clinical trials for venglustat, an oral therapy targeting Fabry disease, a lysosomal storage disorder caused by mutations in the GLA gene.   Beyond drug development, Sanofi has embraced AI to tackle diagnostic bottlenecks. In partnership with Medical Intelligence Service (MIS), the company developed AccelRare, an AI-powered pre-diagnosis tool designed to identify 270 treatable rare diseases.. By analyzing patient data against a repository of clinical and genetic markers, the platform aims to reduce diagnostic delays, which currently leave 25% of patients undiagnosed for 5–15 years.   Ipsen: Targeting Rare Neuroendocrine and Neurological Disorders Ipsen has carved a niche in treating rare neuroendocrine tumors (NETs) and neurological conditions. Its flagship drug, Somatuline (lanreotide), is a somatostatin analog used to manage symptoms and slow tumor growth in NETs. Ipsen’s pipeline extends to rare neurological diseases, including Huntington’s disease, through its non-profit arm, Fondation Ipsen. The foundation supports research collaborations and patient advocacy initiatives, ensuring that therapeutic advancements align with real-world needs.   In 2023, Ipsen secured orphan drug designation from the EMA for a novel therapy targeting fibrodysplasia ossificans progressiva (FOP), a rare genetic condition causing abnormal bone formation in muscles and connective tissues. This designation provides market exclusivity and regulatory incentives, underscoring Ipsen’s commitment to high-impact, underserved conditions.   Genethon: Gene Therapy Innovators Genethon, a biotech firm founded by the French Muscular Dystrophy Association, specializes in gene therapies for rare neuromuscular diseases. Its work on Duchenne muscular dystrophy (DMD) has yielded promising results in clinical trials. By delivering microdystrophin genes via adeno-associated viral (AAV) vectors, Genethon’s therapy aims to restore muscle function in DMD patients, a population with limited treatment options.   The company’s collaborations with international research consortia, such as the European Joint Programme on Rare Diseases (EJP RD), have accelerated translational research. Genethon’s manufacturing facility, compliant with Good Manufacturing Practice (GMP) standards, enables scalable production of gene therapies, addressing a critical bottleneck in the field.   Pierre Fabre: Strategic Partnerships in Oncology and Rare Diseases Pierre Fabre Laboratories, a French pharmaceutical and dermocosmetics group, has expanded its rare disease portfolio through strategic partnerships. In January 2025, the company announced a collaboration with Scorpion Therapeutics to co-develop precision oncology therapies targeting rare genetic mutations. This builds on earlier initiatives, such as their partnership with Atara Biotherapeutics to commercialize allogeneic T-cell therapies for Epstein-Barr virus-driven cancers.   Pierre Fabre’s participation in Horizon Europe, the EU’s flagship research program, has facilitated access to multinational funding and expertise. Their focus on open innovation—evidenced by over 15 partnerships since 2022—exemplifies a model for leveraging external R&D capabilities to address rare diseases.   Collaborative Frameworks and National Initiatives France’s success in rare disease research stems from robust public-private partnerships. The Medicines Innovation Hub, established in 2018, bridges academia and industry, enabling joint ventures in drug discovery and biomarker identification. Nationally, the third Rare Diseases Plan (2018–2022) allocated €670 million to expand genomic sequencing capacity and integrate AI into diagnostic workflows. At the European level, France plays a pivotal role in the EJP RD, which coordinates 130 institutions across 35 countries. This initiative has standardized data-sharing protocols and funded 27 transnational research projects since 2019, including studies on rare pediatric cancers and neurodegenerative disorders.   Innovations Shaping the Future Gene Therapy and CRISPR Advancements French researchers are leveraging CRISPR-Cas9 and base-editing technologies to correct genetic mutations underlying rare diseases. Genethon’s work on AAV vectors has demonstrated efficacy in preclinical models of limb-girdle muscular dystrophy, with clinical trials slated for 20251. Similarly, start-ups like Pharnext are exploring pleotherapy—combining existing drugs at low doses—to modulate gene expression in Charcot-Marie-Tooth disease type 1A.   AI and Big Data Analytics AI platforms like AccelRare and INSERM’s Rare-Boost are transforming diagnostics. By aggregating data from electronic health records, genomic databases, and wearable devices, these tools identify patterns indicative of rare conditions, reducing misdiagnosis rates. Sanofi’s AI-driven clinical trial platforms optimize patient recruitment and dosing regimens, shortening development timelines by 30%.   Economic and Regulatory Challenges Despite scientific progress, economic barriers persist. Orphan drugs often exceed €500,000 annually per patient, straining healthcare budgets. The French National Health Insurance (CNAM) has implemented value-based pricing models, linking reimbursement to real-world outcomes. However, debates continue over balancing affordability with incentivizing innovation. Regulatory incentives, such as the EU’s orphan drug designation, have spurred investment. In 2023 alone, French firms secured 14 orphan drug approvals, reflecting the sector’s vitality.   France’s pharmaceutical industry, anchored by Sanofi, Ipsen, Genethon, and Pierre Fabre, exemplifies the synergy between public policy, academic research, and corporate innovation. By prioritizing gene therapy, AI, and cross-sector collaborations, these companies are addressing unmet needs in rare diseases. However, ensuring equitable access to therapies remains a pressing challenge. Future efforts must harmonize economic sustainability with scientific ambition, ensuring that breakthroughs translate into tangible benefits for patients worldwide. Read the full article