Daily Archives: March 1, 2017

LAKE BUENA VISTA, Fla. Magneuris Sierra, the only teenager ever to win the Cardinals organizations player of the year award, has always had speed as his tailwind in the minors. Now hes adding strength and seasoning.

The 20-year-old center fielder turned a rocket liner off the right-field wall Monday into a start leading off Tuesday, and then added three singles in the game against the Atlanta Braves. In the ninth inning, he dropped a bunt and outran the throw to invite, momentarily, a rally in what ended as a 2-0 loss.

Sierra also tracked down a fly ball in deep center field for what manager Mike Matheny referred to as one of the finer defensive plays of spring.

A whippy hitter who used his speed to win a batting title, Sierra has added strength through maturity and some charge to his bat with a more direct swing. The double Monday and first two singles Tuesday show the enhanced dimension of his game that will translate as he targets Class AA at some point this year.

Hes an electric player, Matheny said. Hes going to be a plus-plus defender when you put him in the outfield on a consistent basis. Hes fun to watch. He brings a little bit of everything.

The Cardinals got two singles and a walk from the first three batters of the game Tuesday, and yet the inning ended with the cleanup hitter at the plate. He was as mystified as anyone by what had just happened. The Braves picked off all three Cardinals, including two on one play.

Sierra was caught leaning after a single, and Kolten Wong and Stephen Piscotty were caught off two batters later. Piscotty was tagged out as he tried to get back to first.

Baserunning has been a focus on the spring as the Cardinals were the worst in baseball last season, and theyre trying to cut Mathenys gas-pedal approach to spring with the smarter, wiser instruction of drills. Of the three pickoffs in the first inning, the error that will get addressed is the rundown Wong got in and how Piscotty was unable to reach second during it.

We do that every spring: Tell them to push the limits, Matheny said. Dont think Ive ever seen that (three pickoffs) before. But thats the message when they get back in the dugout is stay aggressive. We have to be smart. In general, the philosophy in their mind is to keep the hammer down. Look for the opportunity.

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Matheny on CF prospect Sierra: 'He's an electric player' - STLtoday.com

about 15 hours ago Updated: about 13 hours ago

Graffiti on Charlemont Place at the side of the Grand Canal in Dublin. Price talks on the groundbreaking but highly expensive cystic fibrosis drug Orkambi are entering a critical phase, Minister for Health Simon Harris has said. Photograph: Nick Bradshaw.

Price talks on the groundbreaking but highly expensive cystic fibrosis drug Orkambi could be completed in weeks, Taoiseach Enda Kenny has said.

With cystic fibrosis patients due to protest outside the Dil on Wednesday over access to the drug, Minister for Health Simon Harris earlier said the discussion between the HSE and manufacturer Vertex Pharmaceuticals were entering a critical phase.

Mr Kenny told the Dil on Wednesday that he expected Mr Harris would finalise a deal for Orkambi in a matter of weeks.

Mr Kenny said Orkambi was a drug which impacted on the quality of life of people with CF, but it was not the Ministers responsibility to determine the value or otherwise of how it was determined.

He was replying to Fianna Fil leader Michel Martin, who said Orkambi could have a transformative affect on CF sufferers.

Talks stalled earlier this month without agreement but the Minister has sent the HSE back to the negotiating table. It is expected that if agreement is reached, he will seek the approval of Cabinet for additional funding for the deal.

Sources close to the talks say both sides are examining a 10-year deal that would fund the cost of Orkambi and another CF drug, Kalydeco.

Mr Harris said he was extremely conscious the last number of months have been an extraordinarily stressful and worrying time for many CF patients and their families.

Given the level of investment and the scale of the potential benefits for CF patients, there are important commercial and contractual aspects which have to be agreed in the interests of patients and the health service overall.

Several thousand people with CF and their families are expected to attend the second Dail protest organised by Jillian McNulty, who has the disease and is on a trial for Orkambi.

Frustrated with the months of negotiations, they say they do not have the luxury of waiting indefinitely for agreement on the drug, which could treat up to 550 Irish CF patients.

Vertex initially sought 159,000 per patient and the HSE estimated the cost to the exchequer of approval would be almost 400 million over five years. The company has reduced its asking price since then, but the amount sought at the end of earlier talks was still well above established cost-effectiveness thresholds for new drugs. Before the talks began, the HSE said it was willing to pay up to 75 million.

Mr Martin said there had been an attempt to denigrate the drug in leaks from the Health Service Executive (HSE) and others. The drug had since had since received awards, he added.

The bottom line is this drug has a very significant impact on quality of life and longevity of people living with CF, hospital admissions and lung functions and so forth, he added.

There is no doubt about the effectiveness of the drug itself.

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Taoiseach expects deal on CF drug Orkambi in coming weeks - Irish Times

CRYSTAL FALLSThe Crystal Falls Contemporary Center is offering new classes to the community including guitar lessons, knitting classes and another wax painting class. We are excited to continue to offer new classes to the community, said a spokesperson. The wax-painting class, which is for ages 12 and up, is scheduled for Saturday, March 18, from 1-4 p.m. The cost is $35 per person and supplies are included. The knitting class is broken into two, one for kids and the other for adults. The youth class, for students in sixth grade and up is scheduled for Mondays beginning Feb. 27 from 4-5 p.m. The cost is $20 for the four-week class. The adult class, which also begins Feb. 27, will be held on Mondays from 5:30-6:30 p.m. Cost is $20 for the four week class. Guitar lessons with instructor Pete Dishaw, which began the week of Jan 9, will be held on Mondays and Wednesdays from 3:30-5:30 p.m. There are four slots available each day for ages 7 and up. The first lesson is free to discuss gear, style, goals and objectives. For more information, call Pete Dishaw at 715-616-1209 or email guitarlessons906@gmail.com. The center is also continuing the Pinot at the Paint, which is held at the Paint River Landing at 6 p.m. on March 9, April 13, April 20, May 11 and May 25. Sign up online to register for classes today. Visit http://www.cfcontemporarycenter.com and hit the Sign up Here tab. Anyone with questions are asked to email cfcontemporarycenter@gmail.com or message them on Facebook. For more information on the guitar lessons, call Pete Dishaw to schedule a lesson.

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New classes at the CF Contemporary Center - Iron County Reporter

Most of you know the medical definition; a progressive multi-organ illness which affects mainly the lungs. In Ireland average life expectancy is around 28 but many have lost their lives in their teens or early 20s.

But how many of you actually really KNOW what CF is?

CF is constant hospital visits or stays. CF is a needle stuck in your chest for weeks on end to deliver IV antibiotics to make your lungs temporarily better. CF means taking three different types of anti-sickness meds, but these don't always work so you're still so violently ill that you can't eat or drink for days. This then means you are hooked up to IV fluids through the needle in your chest 24-hours a day, which then causes fluid retention.

Can you imagine what it's like to gain 10kg in fluid in 24 to 48 hours? The pain is horrendous, a huge swollen tummy that could be mistaken for a baby. You develop a 'tummy' on your back with the amount of fluid your body can't rid of, huge swollen legs, hands, face, your joints and bones in agony.

CF is knowing that you are living with a ticking time bomb that can go off at any time. CF is haemoptysis: coughing up blood from your lungs like water coming out of a tap, the fear, the panic that if it doesn't stop you are going to die, you are going to bleed to death. CF is being isolated from others with the same illness.

We know exactly what we go through yet we can't even be in the same room as each other. CF is having to watch your CF friends having the life drained out of them, having to watch most of them slowly die, because they picked up a bug or flu that was to end their short lives.

CF is constant stares from strangers when you have a coughing fit, constant looks of terror in case I may be spreading the bubonic plague. CF is always being on edge, constantly listening for a sniffle, sneeze or cough from anyone near you, because that can land you in hospital for weeks.

CF is loneliness. Knowing you could spend your life alone because you get rejected from possible life partners because they cannot deal with the endless hospital visits, endless tears when you can't even speak because you're so breathless, the constant fear 'am I next?'. CF is finding out who your real friends are, who cares enough to visit, send a card, a text to see how you're doing. CF is rejection from "friends" because you can't keep up with normal healthy lifestyles.

CF is fighting every day to be here, to defeat the monster that lives inside you. CF is showing your brave face to the world when you are lying in your hospital bed fearing for your life because it hurts to breathe, to move, to shower, the excruciating pain of gasping for breath when you try to walk a few steps. CF is sometimes being in hospital and not knowing whether you will walk out through the front doors or leave in a coffin through the morgue.

CF is a lonely, traumatising, unforgiving, frightening illness yet there's one thing that has made a difference to my life... Orkambi.

All of this was my reality for approximately eight months of the year. Before Orkambi, CF controlled practically every aspect of my life. CF took away my brother and some of my closest friends. Before Orkambi I was approximately eight months of the year in hospital, in the last three years I've spent just 12 weeks in hospital. Incredible.

While Orkambi isn't a cure, it has stopped progression completely, it has increased my lung function capacity by 10pc and I have boundless energy. I no longer live my life from a hospital bed. Orkambi has given the CF community hope and sometimes hope is all we have.

Jillian has organised a protest with other people with Cystic Fibrosis outside Dil ireann today from 1.30pm to 2.30pm.

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Comment: You know the medical definition... but how many of you ... - Irish Independent