Punch Taverns set to sell 158 pubs to NewRiver Retail for £53.5m

first_imgMonday 24 August 2015 12:19 pm Show Comments ▼ whatsapp Pub group Punch Taverns, which has a portfolio of around 3,500 pubs nationwide, is set to sell 158 pubs for £53.5m to reduce its debt.NewRiver Retail is acquiring the pubs, having previously bought a portfolio of 202 pubs from rival Marston’s. Read more: Investors toast new pub boss sending Punch shares higherPunch Taverns described the pubs as “non-core” to its estate. The company said in a statement the agreement was consistent with Punch’s strategy to sell “non-core” estate at a rate of approximately 200 pubs per year.The company will have around 2,900 “core” pubs left after the deal, with 550 “non-core” estate pubs. Read more: Pub chain shares battered after MP vote to end beer tie: Enterprise Inns, Punch Taverns sufferDuncan Garrood, chief executive of Punch Taverns, said:This transaction is in line with our stated strategy of disposing pubs within the non-core estate, reducing the overall level of our debt, while focusing on our higher quality core pub estate.The deal is expected to be completed on 11 September, with the cash used to close a net debt of £1.5bn that Punch Taverns reported in March.The deal works out at an average of £340,000 per pub, with the pubs being disposed having generated earnings before interest and tax of £7.3m over the last twelve months. Punch Taverns set to sell 158 pubs to NewRiver Retail for £53.5m James Nickerson whatsapp Share More From Our Partners Biden received funds from top Russia lobbyist before Nord Stream 2 giveawaynypost.comAstounding Fossil Discovery in California After Man Looks Closelygoodnewsnetwork.orgInstitutional Investors Turn To Options to Bet Against AMCvaluewalk.comNative American Tribe Gets Back Sacred Island Taken 160 Years Agogoodnewsnetwork.orgRussell Wilson, AOC among many voicing support for Naomi Osakacbsnews.comPolice Capture Elusive Tiger Poacher After 20 Years of Pursuing the Huntergoodnewsnetwork.orgWhite House Again Downplays Fourth Possible Coronvirus Checkvaluewalk.comBrave 7-Year-old Boy Swims an Hour to Rescue His Dad and Little Sistergoodnewsnetwork.orgKiller drone ‘hunted down a human target’ without being told tonypost.com‘Neighbor from hell’ faces new charges after scaring off home buyersnypost.comUK teen died on school trip after teachers allegedly refused her pleasnypost.comInside Ashton Kutcher and Mila Kunis’ not-so-average farmhouse estatenypost.comSupermodel Anne Vyalitsyna claims income drop, pushes for child supportnypost.comKamala Harris keeps list of reporters who don’t ‘understand’ her: reportnypost.comFlorida woman allegedly crashes children’s birthday party, rapes teennypost.comMark Eaton, former NBA All-Star, dead at 64nypost.com‘The Love Boat’ captain Gavin MacLeod dies at 90nypost.comMatt Gaetz swindled by ‘malicious actors’ in $155K boat sale boondogglenypost.com Tags: NULLlast_img read more

Senate confirms Robert Califf as new FDA chief, ending battle for top job

first_img He may get pulled into the debate over drug prices, too. At several hearings, lawmakers have criticized the FDA for failing to approve generic drugs quickly enough to bring the overall cost of prescription drugs down. In addition, some say the FDA should push brand-name drug manufacturers to hold down their prices, something that few people outside of Congress believe the agency currently has the statutory power to do.As US cases of the mosquito-borne Zika virus rise, Califf will also have to ensure the blood supply is safe, and push to speed testing and approval of potential vaccines against the disease. The National Institutes of Health and private companies are working to develop a Zika vaccine.And Califf will have to prove that he’s willing to push the FDA to take a harder line against the overuse of opioids — one of the issues that stalled his final approval by the Senate.“There’s a lot on his plate,” said Mary Woolley, president of Research!America, a DC-based group that pushes for public scientific research support. But Woolley, who has known Califf for many years, called him a great choice for the job. “I can’t say it enough,” Markey said on the Senate floor Tuesday. “Eighty percent of all people in the United States who die from heroin overdoses began on prescription painkillers, opioids that have been given to them by physicians.”“The nomination for Robert Califf to be the new head of the FDA gives us the opportunity to talk about this issue,” Markey added. “We have to now have an honest discussion about the role that agency is playing.”Manchin said he still believed that Califf is too close to the pharmaceutical industry to take appropriate action.“I believe the FDA must break its cozy relationship with the pharmaceutical industry,” said Manchin. Califf, he said, is “just not that person with the passion to change the culture in this important agency. We’ve let the sleeping giant go far too long.”Califf doesn’t seem to be planning a sluggish approach.In written responses to questions from Republican Senator Lamar Alexander of Tennessee, the chairman of the Senate Health, Education, Labor, and Pensions Committee, for his confirmation hearing in November, Califf sketched out his priorities for the job.Key among them is a plan to streamline clinical trials, to reduce their cost and give Americans quicker access to new medications while maintaining high safety standards. Califf said the agency can do so by adopting a two-tier system, using limited, focused trials for medications expected to make a big impact on a small population, and very large trials using electronic heath records and social media. Dr. Robert Califf will have to balance the competing pressures on the FDA for faster approvals and safe products. Win McNamee/Getty Images Califf wins Senate panel vote, but faces trouble on food labeling By Sheila Kaplan Feb. 24, 2016 Reprints PoliticsSenate confirms Robert Califf as new FDA chief, ending battle for top job Tags CongressFDApolicyRobert Califf “He is so well suited, by virtue of his long commitment to clinical research, to working across sectors public and private” to achieve the goals of speedier medical innovation and faster approvals of safe drugs and devices, Woolley said.It has been a long haul. Califf, a cardiologist, was vice chancellor of clinical and translational research at Duke University before taking the number two spot at the FDA in February 2015. The last FDA chief, Dr. Margaret Hamburg, stepped down in March of the same year.Since President Obama nominated Califf to replace Hamburg, he has won the support of many medical societies, patient advocacy groups, academics, and even the New England Medical Journal.But he has had to appease critics who contended that his past reliance on pharmaceutical industry money leaves him too close to the pharmaceutical companies to be an effective cop on the beat.His opponents, led by Democratic Senators Edward Markey of Massachusetts and Joe Manchin of West Virginia, vowed to spend as much as 30 hours talking on the Senate floor about Califf’s shortcomings after a procedural vote on Monday removed their ability to block his confirmation. But in reality, they and their Senate allies only managed to talk for a few hours on Tuesday as their colleagues moved on to other issues.Both Markey and Manchin voted against Califf on Wednesday, along with Republican Senator Kelly Ayotte of New Hampshire and Democratic Senator Richard Blumenthal of Connecticut.The holdouts said they believed that Califf would not push the FDA to do its part to resolve what they called an opioid epidemic, in which patients become hooked on prescription pain-killers, then move on to heroin. Related: Califf wins Senate panel vote, but faces trouble on food labeling Related:center_img As the first permanent chief the FDA has had in nearly a year, Califf will face pressure from lawmakers and patient advocacy groups to speed the pace of medical innovation, even as the agency is under persistent pressure from critics who say that faster drug and device approvals will hurt the public.Califf will also have to manage the agency’s role in two major White House initiatives: the promotion of precision medicine and Vice President Joe Biden’s cancer “moonshot.”advertisement Califf has also promised to increase patient involvement in the drug approvals and communicate better with drug companies during the process. He has also vowed to work on attracting and retaining the best scientists.One of the biggest FDA problems Califf will inherit is the backlog of generic drugs awaiting approval.Far cheaper than brand-name drugs, generic medications are more in demand than ever. They make up 88 percent of all prescriptions in the United States but only 28 percent of the cost, according to the Generic Pharmaceutical Association. But the backlog of 4,300 drugs awaiting approval at the end of 2015 has drawn much criticism, especially from businesses who first filed their applications back in 2009.Califf will also have to get up to speed on food safety issues. Steven Grossman, deputy director of the Alliance for a Stronger FDA, a group devoted to increasing the agency’s funding, said that although Califf has been at the FDA since last year, his focus has been on medical products and tobacco.The FDA is still in in the midst of implementation of the Food Safety Modernization Act, passed in 2010, and Califf needs to be in the loop on the issue, Grossman said.“He will have to catch up quickly,” Grossman said. “This is going to be new territory for him.”Another fast-moving issue is the clash between the FDA and drug companies over off-label uses. Until recently, drug and device makers needed to prove that their products were safe and effective for treating an illness before they could be promoted for that purpose. But a court decision last summer started eroding that ban. Now, the FDA must negotiate a new standard.If confirmed, Califf said in November, he would work on revising the documents “in an effort to harmonize the goal of protecting the public health with first-amendment issues.”Califf will also have to continue pushing the White House Office of Management and Budget to approve the FDA’s proposed crackdown on e-cigarettes. The so-called “deeming rule” would permit the agency to regulate e-cigarettes and cigars. OMB has had the proposal since October and is still debating the issue with lawmakers and industry.Ellen Sigal, chairman of Friends of Cancer Research, a think tank, said she believes Califf’s past work for the pharmaceutical industry is a plus.“It’s an enormous asset that you actually understand how to do clinical trials, how to work with all sectors,” said Sigal, who got to know Califf while he was at Duke. “I think he’s thought a lot about what his immediate steps should be. It’s been difficult going through the confirmation process. I’m just sad it’s taken so long.” Related: WASHINGTON — The confirmation fight may have been tough, but the job could be even tougher.Now that the Senate has officially approved Dr. Robert Califf as the new commissioner of the Food and Drug Administration, he’ll inherit an agency that is being pushed to approve new medical treatments more quickly without sacrificing safety — and facing pressure to act on a host of public health issues, including drug prices and the Zika virus, over which his agency has little control.The Senate confirmed Califf Wednesday on a lopsided vote of 89 to 4, bringing a swift conclusion to a drawn-out battle with a handful of senators who charged that he was too close to the pharmaceutical industry and wouldn’t do enough to end opioid abuse.advertisement FDA official took name off papers Related: 2718760-Califf-Q-amp-as-Alexander (PDF)
2718760-Califf-Q-amp-as-Alexander (Text) Read Califf’s written answers to Alexander’s questions here Senate vote removes major hurdle in Robert Califf’s bid to lead FDA last_img read more

Families bear the burden of this disease in silence. Pope Francis made us into a community

first_imgHealthFamilies bear the burden of this disease in silence. Pope Francis made us into a community Two families, one each from San Luis and Barranquitas, were invited to the papal audience. In a video produced by the event’s planners, Maria Esther Soto-Soto, a 44-year-old mother of four, whose symptoms of HD are strikingly apparent, says: “I have to ask for charity all the time to feed my children.”Before they left home, she and her two siblings here had never been on a plane and didn’t know where Italy was. Their doctor, a gentle man named Ernesto Solis, took them shopping to a big, air-conditioned mall and bought them shoes, underwear, and other necessities.In the video, someone asks Maria Esther: What is she going to say to Francis? “I’m going to tell the pope to help all of us,” she says.Maria Esther Soto-Soto, Venezuelan patient representative Zulay Pinol Romero, Yosbely Soto-Soto, and Dr. Ernesto Solis in the papal hall. Pier Paolo Lisarelli“These communities in Latin America really exemplify how disease and poverty combine at a terrible combination. Not just for the patient but for the children,” Ignacio Muñoz-Sanjuan, a Spanish neuroscientist who helped organize the papal event, told me one morning in Rome. He also made the daunting 6,000-mile journey with the Latin American families. “A lot of kids become caretakers when they’re really young. And they never have any possibility in life at getting ahead.”And with drugs to stem the disease nowhere on the horizon, the 45-year-old scientist is desperately trying to address the social problems Huntington’s patients face, founding a humanitarian project called Factor-H devoted to that very task. “A lot of patients end up on the streets because the families can’t cope with it anymore and because there’s no social structure for them,” he said. “I think there’s something wrong that society doesn’t have special protections for people with a genetic disorder like this. There should be special rights because they have special needs.” By Mona Gable Aug. 8, 2017 Reprints VATICAN CITY — We are waiting for the pope. He is supposed to come at 11. But then we are told he will arrive at 11:30. The crowd sighs in expectation. People turn to each other and smile, hold hands, murmur in various languages. A few rows ahead of me, a mother juggles a toddler on her lap. A folk-rock band called Miner plays sweetly on stage, their voices a hymn in the cavernous concrete hall.As I gaze up at the stained glass windows, I feel like I am in church, about to be blessed. Which, in a sense, I am. Two hours ago, I walked in the mid-May morning sun through St. Peter’s Square with a handful of patients from Latin America as bells rang out. Soon we will meet Pope Francis.I’m sitting in Aula Paolo VI audience hall in the Vatican. Around me are 1,700 people, 150 of them patients — the largest gathering ever of those affected by a fatal genetic brain disorder called Huntington’s disease. HD causes a staggering array of mental and physical difficulties. There are few treatments and no cure. As if that weren’t cruel enough, many people hide the disease, live in isolation. Afraid of discrimination, rejection, condemnation.advertisement Nearly six years ago, my brother died from a wrenching mix of colon cancer and HD. The shock of his diagnosis, his suffering and bravery, and his slow, brutal death nearly broke me. For a time, my family told almost no one the truth.The stigma of HD, and particularly the plight of impoverished HD communities in Latin America, is what has drawn us to the Vatican, for an event called HDdennomore, or Hidden No More. The organizers hope to shatter that stigma, but also enlist the influential Catholic Church to finally render aid to families. It’s the first time a pope or world leader will speak publicly about Huntington’s disease. Privacy Policy Now, Sabine wraps his arm around Brenda. Brenda likes a particular Latin American singer who plays the guitar, is that right? he asks. She nods. Isn’t his name Axel? he says. And then just like a teenage girl’s fantasy, the handsome pop star strolls out on stage and embraces Brenda, who looks incredulous. The audience gasps in delight. And then, as we all watch spellbound, the musician sings to her.I instinctively put my hand on my chest and sigh.Brenda, who has juvenile Huntington’s disease, smiles as she listens to Argentine singer Axel perform. Andrew Medichini/APThis unlikely event all began with a one-time foreign correspondent, two scientists named Elena and Nacho, and a California resort.In February 2016, the three found themselves hanging out around a table in the warm desert sun of Palm Springs, where they had gathered for a Huntington’s conference. Dr. Elena Cattaneo had flown over from her native Italy; Muñoz-Sanjuan — who goes by “Nacho”— had come from LA, where he acts as a vice president of the nonprofit CHDI Foundation, and Sabine were there, too. And though the setting was beautiful and serene, they were trying to solve a problem. The humanitarian project Nacho had launched a few years before was struggling. The NGOs he’d approached hadn’t come on board, and funding was thin.“I was really frustrated not being able to do anything in Venezuela,” he told me one morning in Rome. “The only institution that’s left to help with Venezuela is the church. That’s when I had the conversation with Charles and Elena.” And that’s when Sabine suggested matter-of-factly, “Let’s talk to the pope.”Cattaneo, by chance, knew how to make that happen. She called her friend Pierre, who had close contacts at the Vatican, right then and there. “I’m here with Nacho and Charles Sabine,” she told him. “We have this dream. We are asking for a dedicated event on Huntington’s disease.” And Pierre, she said, responded, “We should do it!”On Pierre’s advice, Cattaneo wrote a letter to Pope Francis, requesting the audience. A few months later, she received a letter in return that the Vatican was considering the appeal. “From then on, it was an earthquake,” she said. About the Author Reprints Ignacio Muñoz-Sanjuan, neuroscientist “I never knew there were so many families all over the world. I thought there was just my family.” As I sit in the hall, moments of drama gracefully unfold. “Brenda, can you come up on stage?” asks Sabine. Smiling, the 15-year-old-girl climbs the steps, her walk shaky. Brenda has come from Buenos Aires, Argentina — the pope’s hometown — with two of her doctors and an aunt who is raising her. They are essentially her only family. She used to share a bedroom with her father until he died of Huntington’s on her 15th birthday. Before that she took care of him. When Brenda started to get sick, her mother fled, taking her only sibling.Brenda can’t talk very well, but, like most teens, she is incredibly adept at texting. One of her doctors, Claudia Perandones, helped plan the papal event. When she gave Brenda the elegant red envelope containing the invitation to meet Francis, the teenager furiously texted in reply: “I love you.” Please enter a valid email address. Mona Gable is a writer in Los Angeles. She is working on a book for Simon & Schuster about the murder of Savanna Greywind and the crisis of missing and murdered Native American women. Despite everything, they have traveled from 26 countries — from as far away as Argentina and New Zealand — with an entourage of researchers, doctors, caregivers, and relatives attending them on the long journey to Rome. For some, it is their first trip beyond their hometown.I am not Catholic, although I am Episcopalian, which is similar, I like to say, only with birth control, gay parishioners, and female priests.I’m also not one to toss around religious clichés. But I feel like I’m witnessing a miracle.The Latin American patients, families, and doctors listen to the Pope’s speech. Pier Paolo LisarelliBefore the pope arrives, Charles Sabine works the crowd. One of the event’s organizers, he is 57 and British with waves of blond hair. Sabine’s father, an uncle, and a half brother all died of HD. He carries the gene, too — meaning he will eventually show symptoms of the disease. Before he started advocating for HD, for years he traveled the world as a journalist for NBC.On stage, Sabine asks the audience, who are seated by nationality, to stand up. “Ireland!” he bellows. “Spain!” he shouts. “Vietnam!” As each group rises, the crowd applauds and cheers. It is a profound moment, symbolizing the power of acceptance by hundreds who know their pain. At last they are not alone.Later that day, a 79-year-old woman from Colombia, who has nurtured and buried four adult children with HD, tells the scientist who brought her here: “I never knew there were so many families all over the world. I thought there was just my family.” Mona Gable Back in Italy, the prominent stem cell scientist and senator served as the liaison with the Holy See. “When I talked to priests, I had the perception that they were interested in the disease,” she recalled. “They thought of it as a very important event, and that the goal was something the Vatican would share and completely support.”Still, the Vatican functions by any number of mysterious and inflexible rules — and Cattaneo had to figure them out. “Each domain has its own activity, but nothing is written down, so you have to learn who to talk to for this and that.”Ultimately, she received a letter: The event was on. Cattaneo and her friends were astounded. The news was especially remarkable because Francis had never done an equivalent event for any other disease.The audience with Pope Francis was the largest gathering of patients with Huntington’s disease in history. L’Osservatore Romano/Pool via APWhen Pope Francis eventually appears, he ambles across the stage, gives a little wave. There is polite applause, a feeling of awe. It’s almost as if we can’t believe he’s really here. Seated about a dozen rows back, I lean forward to see his kind, wrinkled face. A huge silver cross dangles down the front of his white robe. His ears are very large.He sinks into a big white chair, two cardinals in black beside him, men in suits with earpieces behind him. Sabine and Cattaneo say a few words, thank the pope for his compassion and wisdom, for “shining a light on our disease at last.” After Brenda and Axel hand him a scroll illuminating the event’s goals, the 8o-year-old pontiff kisses her on the cheek and she throws her arms around him.What a beautiful moment for Brenda, I think, whose young life has been so insufferably hard. Being embraced by perhaps the most revered man on earth.When the pope begins to read his speech, it’s like hearing a prayer. The hall falls silent. People hope that Francis will speak to the extraordinary difficulties they face because of HD. He does that and more.“In many cases, the sick and their families have experienced the tragedy of shame, isolation and abandonment,” he says softly in Italian, as many listen on headsets in English and Spanish. “Today, however, we are here because we want to say to ourselves and all the world: hidden no more!”After the speech and the applause, the pope makes his way down the marble steps, his retinue of handlers following.He is coming down into the crowd. Everyone seems to hold their breath.At first people are tentative. They smile, shake his hand, but seem overwhelmed. Then the pope reaches Maria Esther, and the tiny Venezuelan woman collapses in his arms, crying. Then her 35-year-old brother, Franklin, embraces the pope. And then their 32-year-old sister, Yosbely, completely falls apart. “Please help us, my house is falling down,” she sobs as Francis holds her and Maria Esther.As a mother who faced the possibility of having Huntington’s, I feel my heart break a little. After my brother died, I got tested because I was frightened my kids were at risk. I was negative. All three of the Venezeulan siblings have children and are in the throes of the disease. A 79-year-old woman from Colombia whose four children died from Huntington’s The morning I said good-bye to the HD families, at the glorious Trevi Fountain, at some point it began to rain.Franklin, his caregiver Samuel, Yosbely, Maria Esther, and I huddled in the doorway of one of the overpriced souvenir shops on the square. Yosbely and I linked arms and chatted. Soon vendors appeared hawking brightly colored rain ponchos and umbrellas. Cattaneo appeared with some small white bags and handed out Italian pastries to everyone.Franklin, who always seemed to quietly take everything in, noted approvingly that I had worn a rain jacket. It was only luck, I laughed. I was going to miss Franklin.Finally, their bus arrived, and everyone began to disperse. I hugged Yosbely, Maria Esther, Franklin, and a few others goodbye and then quickly walked away, reflecting on the moving scenes of the last week. Some stories stay with you, make you feel that life is full of goodness and awe. This would be one of them.As I walked through a cobblestone alley near the Pantheon, the sky over Rome burst into a raging thunderstorm.“I don’t think we’ll ever see something like that in our lifetime,” Nacho had said to me of the papal event.center_img For the next hour, Francis threads his way through the rows. He looks in people’s eyes. Listens to their stories. Laughs and pats babies’ cheeks. Leans down and blesses patients writhing in wheelchairs. You have never seen so many joyful sick people, families, caregivers, and scientists in one room. In turn, people deluge the pope with kisses and hugs, photos of loved ones, books and gifts. I laugh when a young female researcher from London asks him for a selfie, which he happily obliges.Suddenly, Pope Francis stands in front of me. He looks tired, though his soft brown eyes shine with light.I’ve been so absorbed watching everyone else that I’m dumbstruck. So I do what seems perfectly natural.I kiss the pope on the cheek.Before I left for Rome, I was afraid I’d get depressed during the event because I knew people there would eventually die, or because I’d be reminded of my brother. But it feels more like a celebration of life, of promise and hope.After the pope waves goodbye, everyone lingers to savor the day. Sabine dances with his young daughter on stage, while Brenda sits nestled against Axel. People who were once strangers talk and hug each other. Researchers who’ve never worked together exchange business cards, email addresses, and offers of help.I don’t normally do this kind of thing, but in the passion of the moment I ask a young Venezuelan actor to take a photo with me.As I gaze around the room, I think of how many people felt so alone before today, and how that has utterly changed. They’re a global community now.The visiting patients and their families have dinner at the Passionisti Convent in Rome. Pier Paolo LisarelliThat night, I took a cab from my hotel near the Vatican to join everyone for a celebratory dinner. As the sun set over chaotic Rome, we settled into a neighborhood pizzeria where everyone sat around wooden tables, talking, laughing and taking photos. The group was positively rowdy. “Vino! Vino!” someone yelled when the waiter came. I was sitting with Solis, the Venezuelan doctor, and his wife, Reina, Cattaneo, and Franklin, Maria Esther’s brother.“He wants Coca-Cola!” Cattaneo shouted to the waiter, pointing to Franklin.Franklin resembled his sisters, with his heart-shaped face and intelligent brown eyes. Before he got sick, he made his living as a fisherman. He had never learned to read and write. When I asked him about meeting the pope, his face opened into a big smile and he replied in Spanish: “It was beautiful.”A tall man with gray hair stood near us loudly joking with him. I wondered who he was.“That’s Pierre!” said Cattaneo — her friend with Vatican ties had joined the whole group for dinner. “He looks normal. He’s crazy,” she warned us, and we all laughed.As we dined on pizza, Solis, a soft-spoken, middle-aged man with thinning black hair, told me about the desperate situation in Venezuela. Because of the embargo, they had almost no food or medicine. When, three days before, one of the Venezuelan patients had a breakdown in the streets of Rome, his 13-year-old son cried for his father to be given fruit juice, which is what they treated him with at home.In Maracaibo, where Solis lived, people were starving. He and Reina, who is also a doctor, had lost a lot of weight. Even as they were in Rome, Venezuela was collapsing. Their two young daughters hadn’t gone to school for a few days because of the military crackdown in the streets. He loved his patients, but he didn’t know how much longer he could stay in the country.The Latin American families, doctors, and caregivers inside one of Rome’s oldest Catholic churches. Pier Paolo LisarelliThe morning after the papal audience, the families gathered again for a special Mass at one of the oldest churches in the city, the Basilica di Santa Maria in Trastevere. I sat next to Yosbely and Maria Esther. Yosbely, like her sister, was small and thin; her short brown hair was pushed back with a headband. She had a wide smile that revealed her missing front teeth. She was especially sweet and affectionate, always giving hugs. Before he abandoned her and their two kids, her husband used to beat her. Maria Esther’s husband had also vanished. “A lot of times the men leave when things get tough,” Nacho told me.Maria Esther’s balance was terrible, her head wobbled, and she had trouble focusing her eyes. She was also delightfully strong-willed. One pearly evening later that week, we toured the Sistine Chapel. We were about to descend a spiral staircase when I noticed her standing alone. She looked dismayed. The group was leaving and we needed to go, but the woman who often helped her navigate such tricky situations wasn’t around. So, I told her I was going to help her down the stairs, and gently took her arm. She grabbed the banister, her mouth set, and step by step down we went. Several times I was terrified we were going to tumble down the slippery marble steps. We didn’t.Maria Esther reminded me, in a good way, of my brother. My brother was a warm, outgoing guy — and also determined. When his involuntary body movements became severe, he refused to hide or let it stop him from doing the things he loved. He went to football games and restaurants, his daughter’s high-school graduation, flew to LA to stay with me while he attended a conference. The man would have still skied down black diamonds if he could have. At the end he still wanted to brush his teeth without help. Privacy Policy In the history of HD research, Latin America figures large. In the Venezuelan towns of San Luis and Barranquitas, Huntington’s is nearly 1,000 times more prevalent than anywhere else in the world. Because of poverty, lack of education, and government neglect, the disease — which is caused by a single mutant gene — flourished and spread from one generation to the next. When scientist Nancy Wexler and a team of international researchers identified the gene in 1993, the DNA of the Venezuelan families was instrumental in that discovery. Yet despite their gift to science, they never benefited. Even today, these communities live in staggering poverty, with almost no food, medicine, or means of work — or even access to the genetic test for HD. Related: Newsletters Sign up for Morning Rounds Your daily dose of news in health and medicine. A rare disease killed her mother. Can this scientist save herself? Related: Leave this field empty if you’re human: Because society has shunned people with HD, their presence in the majestic, high-ceilinged hall is strikingly powerful. Scores of patients line the front rows, their symptoms plainly visible. Some flap their arms, jerk their heads. The sickest rock in wheelchairs. No one is ashamed.advertisement @monalgable Pope Francis hugs a boy during an audience with Huntington’s disease families at the Vatican. Andrew Medichini/AP “I think there’s something wrong that society doesn’t have special protections for people with a genetic disorder like this. There should be special rights because they have special needs.” Please enter a valid email address. Tags geneticspatientsrare disease Newsletters Sign up for Daily Recap A roundup of STAT’s top stories of the day. Should you take a genetic test? Here’s what expert counselors advise Leave this field empty if you’re human: My thoughts returned to Mass, when we had reached the part of the service where parishioners and priests offer each other “the sign of peace” — a profound tradition where people turn to their neighbors, grasp their hands, and say, “The peace of the Lord be with you.” It’s to symbolize our role in humanity as peacemakers.As organ music softly played, everyone stood, extending their hands, their voices rising and echoing in the ancient stone church. For several minutes, patients hugged their caregivers, scientists embraced patients, and people left their seats to seek out loved ones. The emotion was overwhelming. Yosbely, Maria Esther, and the others from Venezuela, where peace was unimaginable, were crying.I had not cried at all during the papal event. But as I stood there hugging a patient advocate from Venezuela, tears began streaming down my cheeks.last_img read more

Student Exploitation Never Ends in North Korea

first_img North Korea tries to accelerate building of walls and fences along border with China News “I really hope they get rid of compulsory education; I would rather pay a monthly tuition fee…” This is the bitter cry of parents in North Korea, a country which prides itself on being a “land of education” and having 11-years of compulsory schooling. For in North Korea, schools have lost sight of their role as places of education, turning into pseudo-prisons for detaining, regulating and exploiting the young instead.Parents receive punishment in place of their childrenAs a general rule, attendance rates are higher in People’s Schools (elementary school) than in middle schools (combined middle and high school). In the case of People’s Schools, it is relatively helpful for parents to send their children to school while they go out to the jangmadang or other workplaces, since elementary age students lack work skills or independence. In addition, the youngest of students receive aid fairly consistently from the North Korean state, at least as a matter of formality. However, students who go to school during their teens are confronted with a vastly different scenario.North Korean middle school students are subject to exploitation for all kinds of reasons, while those teenagers in poorer families have to make money for the household as well.However, despite this reality, North Korea has recently boasted of its high middle school attendance rate.According to inside North Korean sources, the attendance rate of middle school students since 2007 has by and large exceeded 70%, taking into account regional and seasonal variations.The reason for this increase is a governmental regulation. Under this regulation, parents began to be held directly responsible for the attendance or non-attendance of their children, and punished accordingly.One North Korean source explained, “Since the end of March last year, as a result of a decree from the Party Central Committee, the parents of long-term unexcused absentees have received three-month unpaid labor or six-month labor detention camp sentences. Many parents who did not send their children to school in the fall of last year due to the food crisis were taken to the People’s Security Agency, the municipal party, or the factory Primary Party Committee to write self-criticisms or received labor detention sentences to set an example to others.”The source continued, “The attendance rate of students has begun to adversely affect parents’ work as officials as a result. The measure was actually put into effect after the children of officials or affluent households started failing to show up to school, choosing to receive private instruction instead.”Last June, an incident occurred when the manager of the Chundong Collective Farm in Yangkang Province was in the process of being promoted to a position with the Agricultural Economic Committee. However, the manager was suddenly demoted instead, after the principal of Chundong Middle School in Hyesan, with whom the manager had long had a strained relationship, reported that his children were receiving home schooling instead of going to public school.In another example, around 30 graduates of Osanduk Midlde School in Hoiryeong, North Hamkyung Province were dispatched to farms, and parents working in Party positions were dismissed from office, for failing to sign up for the People’s Army’s Solicitation Project, a traditional act of loyalty to the state by students expressing their formal “desire” to enter military service. The increasing burden of education“We are scared to send our children to school.”This expression is not the voice of a parent who fears school violence for his or her child. Instead, it is the voice of one who is troubled by the question “What do they want my children to give this time?” For example, a decree was issued in October of last year demanding that every middle school student in the border region including Musan and Onsung and Hoiryeong submit 100 nails and a plank each. From fall of 2003 through 2005, the North Korean authorities collected wood and nails from middle school and high school students all over the country, officially as part of a nationwide fortification campaign. The strategy was to lay planks studded with nails in potential points of infiltration by enemy special forces in the case of war. The North Korean authorities placed this important national defense agenda item entirely in the hands of middle school students.Of course, in the latest case the activity was undertaken to prevent people from defecting to China. Additionally, since the beginning of this year, the North, shouting the slogan “A New Revolution in Metal Production,” assigned the obligatory procurement of 15 kilograms and 25 kilograms of scrap iron per person to elementary and middle school students respectively. Furthermore, since the 1980s, the North Korean authorities have ordered middle school students to submit 10 kilograms of dried bracken (equivalent to 100 kilograms fresh) and a rabbit skin annually. In the summer season, students are even granted a 15-day “bracken vacation” to gather the requirements.Since 2000, the authorities have also collected a kilogram of beans from middle school students every fall as a part of a planting campaign.Inevitably, the income from this extensive list of exploitative projects has been going straight into Kim Jong Il’s pockets under the pretext of national foreign-currency earning.In addition, from renovating school fences and roofs to the bookshelves and the chairs in the classrooms, the reality is that all school funds and construction materials are derived from the efforts of students alone. Among these, one of the biggest is heating.North Korea, since the end of the 1980s, stopped rationing coal to heat schools in the winter, so the students have had to offer money to individuals or factories to buy fuels such as coal or dry wood.Students, because of their myriad duties, are not even able to take a break on Sundays, instead being forced to participate in labor mobilization campaigns such as assisting on construction sites, planting rice in the spring and harvesting in the autumn. The source agreed, “Middle school students are ‘farmhands’ raised by the North Korean authorities. Societal or school-related offerings demanded of students now even exceed those of parents to their work or People’s Units.” SHARE News Facebook Twitter News Student Exploitation Never Ends in North Koreacenter_img RELATED ARTICLESMORE FROM AUTHOR Entire border patrol unit in North Hamgyong Province placed into quarantine following “paratyphoid” outbreak There are signs that North Korea is running into serious difficulties with its corn harvest AvatarDaily NKQuestions or comments about this article? Contact us at [email protected] News By Daily NK – 2009.09.07 2:08pm last_img read more

Jamalco Launches School Bus Service for Children in Manchester

first_imgAdvertisements RelatedJamalco Launches School Bus Service for Children in Manchester RelatedJamalco Launches School Bus Service for Children in Manchester Jamalco Launches School Bus Service for Children in Manchester UncategorizedJune 5, 2008center_img RelatedJamalco Launches School Bus Service for Children in Manchester FacebookTwitterWhatsAppEmail The bauxite and alumina company, Jamalco, has launched a school bus service to transport children attending basic and infant schools in their operating areas of Asia and Mount Oliphant, and surrounding communities in Southern Manchester.At the launching ceremony held on Monday (June 2), at the Holy Cross Basic School, Public and Community Relations Administrator at Jamalco, Pamela White said this was an initiative geared towards helping the children to get to school on time and safely.“Today, we have launched a special programme with the Holy Cross Basic School, and it is in terms of safety and travel. Jamalco is paying for the services of a bus that will be transporting some of the toddlers here from the Mount Oliphant, Manningsfield, Rhooms Town and Asia areas to school. These are children who have had difficulty getting to school in the mornings, at least getting there safely,” she said.“As a company, we have an increased number of vehicles on the roads, and we decided to extend this courtesy to the school. We know it’s a need, and at Jamalco we have a saying that ‘no risk is worth your life.’ And when it comes to the young ones, we know that their lives are equally important, because they are the future,” Mrs. White added.Welcoming the move by Jamalco, Principal of the school, Adalza Smith said the programme would help to increase attendance at the institution.“I must say that this will help to increase the attendance in our school, and it will also help the children to be here on time. I am so happy that they have chosen the areas of Manningsfield, Mount Oliphant and Asia, because those are the areas that we had problems with the children getting to school and getting back home. We hope that next term, we will get more students and they will be part of this project,” Ms. Smith said.On hand to welcome the project were: Woman Constable Patricia Jackson, from the Asia Police, who made a presentation on safety tips for children when they are travelling; and Education Officer in the Ministry of Education, Suzette Sophia-Smith.Come September, the company will roll out the next phase of the programme that will embrace the Pratville Primary and Infant School. There are 80 students enrolled at the Holy Cross Basic School.last_img read more

Govt must be upfront about its plans for DOC land

first_imgGovt must be upfront about its plans for DOC land The New Zealand National PartyThe Prime Minister needs to be clear with New Zealanders about what her Government plans to do with ownership of conservation land, National Party Leader Judith Collins says. /Public Release. This material comes from the originating organization and may be of a point-in-time nature, edited for clarity, style and length. View in full here. Why?Well, unlike many news organisations, we have no sponsors, no corporate or ideological interests. We don’t put up a paywall – we believe in free access to information of public interest. Media ownership in Australia is one of the most concentrated in the world (Learn more). Since the trend of consolidation is and has historically been upward, fewer and fewer individuals or organizations control increasing shares of the mass media in our country. According to independent assessment, about 98% of the media sector is held by three conglomerates. This tendency is not only totally unacceptable, but also to a degree frightening). Learn more hereWe endeavour to provide the community with real-time access to true unfiltered news firsthand from primary sources. It is a bumpy road with all sorties of difficulties. We can only achieve this goal together. Our website is open to any citizen journalists and organizations who want to contribute, publish high-quality insights or send media releases to improve public access to impartial information. You and we have the right to know, learn, read, hear what and how we deem appropriate.Your support is greatly appreciated. All donations are kept completely private and confidential.Thank you in advance!Tags:conservation, Government, Minister, New Zealand, New Zealand National Party, nzpol, Prime Ministerlast_img read more

CU-Boulder Sources on Iraq War and Elections

first_img Published: Dec. 14, 2005 NEWS TIP SHEET Despite continuing violence, Iraqi voters are casting ballots today to choose a parliament that will be charged with creating a government to run the country for a full four-year term. The importance of the election is more symbolic than substantial at this time, said political science Instructor Michael Kanner of the University of Colorado at Boulder. While the election will not alter the day-to-day quality of life in Iraq anytime soon, Kanner said it is a chance for the Iraqi people to send a message to insurgents that they are choosing democracy over violence. “It’s another positive step forward and another case of the Iraqi people saying we are not buying into the insurgency,” said Kanner. “A strong turn-out for the election essentially says the Iraqi people will continue the democratic process, so it pays off symbolically and shows that the insurgency isn’t gaining the type of popular support that it wants.” Kanner is a retired U.S. Army intelligence officer and counter-terrorism expert. He can talk about security issues in Iraq and Afghanistan and he can be reached at (303) 492-7138 or by e-mail at [email protected] Other faculty sources at the University of Colorado at Boulder who can comment on the war in Iraq and the latest Iraqi elections include: o Robert Schulzinger, professor of history and director of CU-Boulder’s International Affairs program. Schulzinger is an expert on U.S. foreign policy, diplomacy, American politics and the Vietnam War. He can be reached at (303) 492-7993. o Francis Beer, professor of political science. Beer specializes in the study of conflict and peace, and international relations. He can be reached at (303) 492-7802. Share Share via TwitterShare via FacebookShare via LinkedInShare via E-maillast_img read more

Play bingo with Staff Council

first_imgYahtzee Night with Staff Council October 29 Staff Council will be hosting its first YAHTZEE! Night on Thursday, October 29, at 7:00 p.m., via Zoom. Please register by Wednesday, October 28. You will be contacted with the link to Zoom room, a copy of the score sheet (you can hand write it or print it), rules of the game, and a list of prizes. Read more Cook with Your Boulder Campus Staff Council As we near the end of October and head toward the winter months, Staff Council would like to share something that you can enjoy in your own home! We have compiled our favorite recipes into an online cookbook, which you’ll find on the Outreach Page on our website. Read more Play Virtual Games with Staff Council We take your concerns seriously, of course, but we also look forward to playing games with you! Join us for Yahtzee on October 29 and Jeopardy on November 10. Both games will be via Zoom and require registration prior. Read more Categories:Be engaged.Tags:Outreach2020center_img Related Articles Published: Aug. 25, 2020 Join Staff Council for a bingo game night! Since we can’t be together in person, we want to bring together people interested in some virtual fun and games! Join us, meet other staff from the CU Boulder Campus, play some bingo, and win fun prizes! Family members are invited, too!We are trying to keep the bingo groups small. Please pick a date that works for you and sign up via the link below. Be sure to enter one submission for each player. If one date is full, please pick another!Thursday, September 3 at 7 p.m.Tuesday, September 8 at 5 p.m.Wednesday, September 16 at 6 p.m.Friday, September 25 at 5 p.m.last_img read more

Take Care When Buying Gifts for Children

first_imgAdvertisements RelatedTake Care When Buying Gifts for Children RelatedTake Care When Buying Gifts for Children Take Care When Buying Gifts for Children CultureDecember 23, 2011 By Alecia Smith-Edwards, JIS Reporter FacebookTwitterWhatsAppEmail KINGSTON — The Consumer Affairs Commission (CAC) is imploring persons to exercise care when purchasing gifts for children during the Christmas season. In an interview with JIS News, Communications Specialist at the CAC, Dorothy Campbell, said shoppers should be especially cautious when making purchases for younger children. “For the younger ones, you simply must be aware that some items might be toxic, items might have small parts that will fall off like the eyes of a teddy bear or the tongue or something like that. Ensure that those parts are not removable, look for those that have… pieces glued in so they’re not choking hazards for the little ones,” she advised. According to the Washington Toxics Coalition’s 2011 Healthy Holiday Gift Guide, harmful toxic chemicals, including lead, cadmium, flame retardants and phthalates, can be found in some toys, jewelry, personal care products and other items for children.  The Coalition, on its website:www.watoxics.org/2011giftguide, suggests that shoppers avoid purchasing plastics toys, particularly those that list vinyl/Polyvinyl chloride(PVC) as ingredients. Soft plastic toys are commonly made of vinyl, which can contain lead, phthalates, or other harmful chemicals. Persons should rather, opt for plastic-free toys made of wood, cloth, wool, or paper. Shoppers need to look for plush toys, games or puzzles made of paper, dolls made of cloth, wool or paper, and wooden vehicles, rattles, and figurines. Shoppers are also being warned to avoid metal jewelry for children, which may contain toxic heavy metals, like lead and cadmium. In addition, persons should avoid purchasing art supplies with warnings like Caution, Danger, Warning, May Cause. The Washington Toxics Coalition is a nonprofit organisation in the United States that protects public health and the environment by helping to eliminate toxic pollution. RelatedTake Care When Buying Gifts for Childrenlast_img read more

Ofcom cuts licence fees from earlier proposal

first_img Richard is the editor of Mobile World Live’s money channel and a contributor to the daily news service. He is an experienced technology and business journalist who previously worked as a freelancer for many publications over the last decade including… Read more UK operators splash £1.4B in latest 5G auction Ofcom completes 5G spectrum allocation Related Author Previous ArticleIntel, Verizon partner on 5GNext ArticleHealth apps on the rise but barriers remain, reveals study Vodafone and Telefonica O2 were winners as the UK regulator revised its February 2015 proposal for licence fees, but number one player EE was less happy.The UK’s four operators will now be charged a total of £199.6 million annually, a 12.5 per cent reduction from the £228.3 million previously proposed.However, the new fees are a threefold increase over the current charges of £64.4 million, marking a steep increase in what the country’s four operators pay for 900MHz and 1.8GHz frequencies.The new fees came into effect in two phases. One half of the increase will come into effect on 31 October 2015; the second half will come on 31 October 2016.Both Vodafone and O2 benefited from a revision in Ofcom’s February 2015 proposals. Each will now pay £49.8 million, compared with the earlier proposal of £62.6 million.EE will now pay £75 million, a slight decrease from £77.3 million. H3G will pay £25 million, compared with £25.8 million.But EE, the UK’s largest operator, was not happy. “We think Ofcom has got this wrong. The proposed licence fees for 1800MHz spectrum are based on a flawed approach,” it said.“The trebling of fees is bad news for British consumers and business as it raises the risk that we won’t be able to offer the best prices, and invest and innovate at the pace we and our customers would like,” it added.EE also said the new fees did not reflect the higher costs it had taken on to meet coverage obligations.In explaining why it reduced its February 2015 proposal, the watchdog looked at the operators’ deal with the UK government to provide 90 per cent voice coverage, but “concluded it did not have a material effect on the market value”.But Ofcom did benchmark internationally, taking particular account of the German spectrum auction, which concluded in June this year.The final fees for 1.8 GHz are three per cent lower than earlier this year, reflecting Ofcom reducing the discount rate used to convert a lump-sum value (of the kind paid by licensees when they acquire spectrum in an auction) into an annual payment.There was also an additional factor in the case of 900 MHz, where fees are 24 per cent lower than the regulator’s earlier proposal. The significant drop in 900 MHz fees seems to be the result of a comparison with the German auction, a high-rolling affair but one driven primarily by aggressive bids for 1800MHz allocations.Ofcom noted in a recent report on the German auction that 900 MHz sold at a “significantly lower price” than 1.8 GHz, an outcome it had not observed in other countries in its database. Ofcom Home Ofcom cuts licence fees from earlier proposal AddThis Sharing ButtonsShare to LinkedInLinkedInLinkedInShare to TwitterTwitterTwitterShare to FacebookFacebookFacebookShare to MoreAddThisMore 24 SEP 2015 Richard Handford Tags UK launches regulator targeting tech giantslast_img read more