Week 5 我想念我自己

  Still Alice Author Lisa Genova  Puts The Spotlight on Huntington's                                                                  DiseaseLa

Posted on 03.04.2016 by Libby-Jane Charleston

Neuroscientist and author Lisa Genova is hoping her latest book will put the spotlight on Huntington’s disease, the same way her best-selling book Still Alice did for Alzheimer’s.

Huntington's is a lethal neurodegenerative disease with no treatment and no cure. Genova’s latest book Inside the O’Briens explores the impact a man’s diagnosis has on his family and how each of his children deal with the fact they have a 50/50 chance of inheriting the disease.

Genova told The Huffington Post Australia she chose to focus on Huntington’s because so many of us have either not heard of the disease, or have no idea what a cruel, devastating disease it is.

“I’m hoping to create urgent attention and compassion. I chose Huntington’s disease because while most people are familiar with Alzheimer’s, many people don't know much about Huntington’s," Genova said.

“The family in this book are living with Huntington’s. It’s a multi-generational story because the disease is genetic. If your parents have it, every child has a 50/50 chance of getting the disease. Often symptoms don’t appear until after the age of 35, so by that time many people have already had kids and passed the disease down or not. So there is no cure and no treatment.”

Genova’s book Still Alice was made into an award winning film starring Julianne Moore who won an Oscar for her portrayal of Alice; an academic who finds herself, aged 50, in the rapid downward spiral of early on-set Alzheimer’s. Originally self-published, Still Alice went on to become a bestseller selling more than 100,000 copies in Australia alone.

Genova now travels the world speaking about Alzheimer's and Huntington’s, traumatic brain injury and other diseases.

“Huntington’s is a dreadful disease. It involves uncontrolled movements including face twitching, arms swaying around, struggling to walk, slurring words. You have no control over your muscles. It’s very off-putting and strange to watch. People unfamiliar with the disease would think the person is drunk or on drugs. Eventually you can’t walk or talk or feed yourself. You become totally dependent on others for care. There is also obsessive compulsive disorder, rage, depression and apathy. It is one of the cruellest diseases,” Genova said.

“When I was at my first job out of college in 1993, I was literally down the hall from the people that discovered the mutation that causes Huntington’s disease and I remember thinking, ‘I’ve witnessed an historic moment. This mutation is the only cause of Huntington's. They are going to cure this disease.’ But 23 years later there is still no cure and no treatment.”

Genova said this is partly because Huntington’s is known as an ‘orphan disease,’ where drug companies are not motivated to solve the problem.

“Around 30,000 people in the US have Huntington’s and there are 5.4 million with Alzheimer’s. So if you’re a drug company you are more financially motivated to cure Alzheimer’s which is more complicated disease to solve. But if you can solve Huntington’s it’s likely that strategy can be useful for other neurodegenerative diseases such as motor neuron disease.”

Novels are always a powerful way to educate the world about topics that are unknown or terrifying. Inside the O'Brien's is a story about a Boston police officer who is diagnosed with Huntington’s and didn’t know it was hereditary -- he just thought his mother was an alcoholic.

“There is so much shame attached to the symptoms and the families affected become very alienated. My character, Joe O’Brien, has four kids. Now because the mutation was isolated in 1993, anyone can get a blood test and find out if they are going to get Huntington’s. But it’s a very bizarre question to be faced with early in life. Most of us don’t say, ‘Wait, I need to find out what I’ve inherited genetically from my parents.’ We don’t have that available to us. But for the Huntington’s community, they’re faced with this difficult question -- ‘Do I want to know, or not?’"

“The book is about finding hope in a hopeless situation. What’s inside you and what you have inherited. It’s about the humour and faith and traditions of your family, about trying to stay present and not get worried about a future that may or may not happen. It’s about a family resilience.”

While she was carrying out research, Genova got to know some families affected by Huntington’s and she was struck by the adaptability of the human spirit.

“People can find a way to live, even when they are constantly faced with dying,” Genova said.

At the time of writing Still Alice, Genova was working for bio-tech companies and, when she couldn’t find a literary agent, she self-published the book and sold it from the boot of her car.

“Ten months later, Simon and Schuster bought the book and now it’s allowed me to make a living and give me a financial reason to write my next book. Following the Still Alice movie, I realised what the movie and the book can create global conversation, deeply rooted in empathy and understanding. That could lead to social change that could drive the funding for research that we need to develop treatments an a cure. We’ve seen that happen with cancer and HIV, so it’s not impossible. If we take something out of the shadows and acknowledge it exists and needs an urgent solution, then it is achievable.”

http://www.huffingtonpost.com.au/2016/04/03/huntingtons-disease-genov_n_9579134.html

Structure of the Lead:

Who: Neuroscientist and author Lisa GenovaWhy: Neuroscientist hoping to create urgent attention and compassion.What: Neuroscientist and author Lisa Genova is hoping her latest book will put the spotlight on Huntington’s disease, the same way her best-selling book Still Alice did for Alzheimer’s.How: Huntington's is a lethal neurodegenerative disease with no treatment and no cure.When: 03.04.2016

Key Words:

1. neurodegenerative :神經退行性

2.  Alzheimer: 阿茲海默症

3. portrayal :畫像

4. swaying :搖曳

5. empathy:同情

6. hereditary: 遺傳

7. neuron: 神經元

8. mutation :突變

9. Boston: 波士頓

10.Still Alice: 我想念我自己

Per saperne di più: http://www.stateofmind.it/2016/04/still-alice-morbo-alzheimer/

Week 4 香港書商失蹤

Missing Hong Kong bookseller Lee Po returns home from mainland China after disappearing last December

Lee Po returns home quietly, denying he was kidnapped and asking police to cancel their missing-person investigation

PUBLISHED on Thursday, 24 March, 2016, 7:33pm by  Clifford Lo and Tony Cheung

The man at the centre of Hong Kong’s missing bookseller mystery returned quietly to the city yesterday and asked police to end their investigation into his missing-person case.

Causeway Bay bookseller Lee Po, who vanished from Hong Kong last December and later surfaced on the mainland, told local authorities again that he did not require any police or government assistance.

‘I’ll never publish banned books again’: Hong Kong bookseller Lee Po quits book trade upon return to city

The same requests were made by his two associates – Cheung Chi-ping and Lui Por – when they returned to the city earlier this month after disappearing last October, prompting speculation that they had been frightened into silence. All of them have dismissed concerns that they were kidnapped and spirited across the border by mainland agents over the smuggling and sale of banned books critical of China’s leaders.

Lee, who left the city without going through proper immigration channels, was handed over to Hong Kong authorities at the Lok Ma Chau border crossing yesterday afternoon.

‘Erase critics, too’: rights groups slam China over missing Beijing-based journalist in wake of Hong Kong booksellers

“As Lee Po did not provide thorough information about his last departure, no arrest has been made against him at this stage,” police and immigration said in a written statement. “[The Immigration Department] needs to conduct further investigation to ascertain if there is any prima facie evidence showing that he has committed any immigration ­offences.”

When he was interviewed by immigration and police officers upon his return yesterday, the bookseller stuck to his story that he had voluntarily gone to the mainland to assist in an investigation involving his publishing colleague, Gui Minhai, who also disappeared last year and surfaced later on the mainland.

“He stated that he was free and safe whilst on the mainland. He restated his request for the cancellation of his missing-person case,” local authorities said.

“He refused to disclose other details. After meeting with police, Lee Po left on his own.”

Lee was more forthcoming in an interview with selected mainland and Hong Kong media groups, telling them he would never run a bookstore business again.

“I will never publish and sell those books that make things up. The freedom of publication and of speech does not mean that people can make things up,” he was quoted as saying. “Like I have said earlier, there are still people doing this business in Hong Kong. I hope they won’t do it any more.”

He said he had sneaked into the mainland because he wanted to settle matters with his companies. Now that three of his associates had been released on bail, he said, his efforts had not been in vain. He met the three on Wednesday to talk about what to do with the companies, he revealed.

Booksellers slipped back to mainland China after requesting Hong Kong police drop missing persons cases

Lee went on to say that during his time across the border, he had witnessed the prosperity of the country and felt proud to be ­Chinese. He added that Hong Kong was still his home and he would never leave the city to settle elsewhere.

Five associates of the Mighty Current publishing house and Causeway Bay Books store disappeared one after another in mysterious circumstances. Gui was the first to vanish in Pattaya, Thailand, in October. Lam Wing-kee, Cheung and Lui disappeared that same month while on the mainland. Lee vanished in December.

Their disappearances have led to widespread fears that they were kidnapped by Chinese agents because their companies specialised in books critical of the Chinese Communist Party.

Gui has been accused of ordering his associates to deliver about 4,000 banned books across the border since October 2014.

On the sidelines of the Boao Forum for Asia in Hainan (海南) yesterday, Chief Executive Leung Chun-ying said the central government was aware that Hongkongers were very concerned about Lee’s case.

“The SAR government has consistently been transparent in handling the incident,” he said before the police and immigration statement was issued. “We have spared no effort in reflecting [concerns] to the mainland.”

Labour Party vice-chairman Lee Cheuk-yan said the bookseller’s claim that he had smuggled himself into the mainland was “an insult to the intelligence of Hong Kong people”.

Democratic Party lawmaker James To Kun-sun said the government was adding insult to injury by saying it would continue to probe whether Lee had committed immigration offences.

In an explosive twist earlier, the Post obtained an email by Lee dated November 10 to Gui’s daughter, Angela, in which Lee wrote to say that he feared Gui “was taken by special agents from China for political reasons”.

http://www.scmp.com/news/hong-kong/law-crime/article/1930052/missing-hong-kong-bookseller-lee-po-returns-home-mainland

Structure of the Lead:

Who: Causeway Bay bookseller Lee Po

Why: Cheung Chi-ping and Lui Por have dismissed concerns that they were kidnapped and spirited across the border by mainland agents over the smuggling and sale of banned books critical of China’s leaders.

What: The man at the centre of Hong Kong’s missing bookseller mystery returned quietly to the city and asked police to end their investigation into his missing-person case.

How: Hong Kong said that he will not publish banned books again

When: March 24 ,2016

Key Words:

1. vanished:消失

2. Erase:抹去

3. sneaked:潛入

4. whilst:而

5. prosperity:繁榮

6. centre:中央

7. spared:倖免

8. agent:代理人

9. circumstance:環境

10.sideline:場邊

Week 3 日韓慰安婦協議：Japan, Korea, comfort women, deal/agreement

Japan, South Korea Agree to Aid for ‘Comfort Women’

Deal will include support services using Japanese government funds

reported by 

KWANWOO JUN in Seoul and

 

ALEXANDER MARTIN in Tokyo

Updated Dec. 28, 2015 1:45 p.m. ET

South Korea and Japan reached an agreement that aims to resolve a decades-old dispute over Korean women who were used as sex slaves by Japanese soldiers during World War II, a festering wound that has inflamed tensions between the U.S.’s two most important allies in Asia.

Under the accord, Japan will supply ¥1 billion ($8.3 million) in government funds to support the so-called comfort women. Japanese Prime Minister Shinzo Abe also apologized for the women’s treatment, something he had been reluctant to do previously.

The wartime issue has long strained ties between the two neighbors and caused concern in Washington. “We must not let this problem drag on into the next generation,” Mr. Abe said in Tokyo after the agreement was announced in Seoul.

The U.S., which sees better relations between the two countries as key to checking China in the region, welcomed the deal. “We applaud the leaders of Japan and the Republic of Korea for having the courage and vision to reach this agreement, and we call on the international community to support it,” said Secretary of State John Kerry.

The agreement involved concessions by both sides. Japan has previously maintained that all issues of compensation to South Koreans for the war were resolved when it restored diplomatic relations with Seoul in 1965. In the current deal it edged away from that position by agreeing to fund a South Korean foundation to aid the women forced into servitude, while also insisting the money didn’t represent direct compensation for wrongdoing.

By apologizing, Mr. Abe also went further than his government has previously. The prime minister made a direct apology, expressed both in a statement by his foreign minister and in a telephone call with South Korean President Park Geun-hye.

“Prime Minister Abe expresses anew his most sincere apologies and remorse to all the women who underwent immeasurable and painful experiences and suffered incurable physical and psychological wounds as comfort women,” the statement said.

The statement also acknowledged Japanese government involvement in the comfort women program, a point Mr. Abe and conservatives in his ruling party have frequently questioned.

Still, some in Korea called Mr. Abe’s statement inadequate. The Korean Council for Women Forced Into Sexual Slavery, which represents some former sex slaves, said the agreement didn’t make clear enough that the recruitment of the women “was a crime done by the Japanese government and military systematically.” It said Japan should directly compensate the women instead of creating a fund to do so.

The council also objected to Seoul’s promise that it would consider removing a statue of a girl in front of the Japanese embassy in Seoul that commemorates the women’s suffering. Tokyo has called the statue an affront.

The group called the deal “humiliating” and said Seoul “gave a bushel and only got a peck [of returns in the agreement].” Some comfort women told Korean media they would accept the compromise.

Ms. Park and Mr. Abe spoke by phone for about 15 minutes after the deal. Ms. Park said she hoped the accord would turn into “a precious opportunity to restore the honor and dignity of the victims” and “build trust to bring in a new relationship” between the two countries.

Mr. Abe took office in December 2012 and Ms. Park two months later. Since then, the two sides have engaged in almost continuous squabbling on the international stage, devoting considerable diplomatic effort to seemingly minor battles such as whether textbooks in the state of Virginia should refer to the body of water between them as the Sea of Japan or the East Sea.

Monday’s deal includes a promise by both sides to stop criticizing each other in such forums and says the comfort-women issue has been “finally and irreversibly” resolved.

The agreement represents a relief for U.S. diplomats who have wrung their hands over the dispute between the two U.S. allies. President Barack Obama brought Ms. Park and Mr. Abe together for a three-way meeting in Europe in March 2014, but the two Asian leaders barely looked at other.

The State Department’s top official for East Asia, Daniel Russel, said in May that “tension between those two friends constitutes a strategic liability to all of us”—one of many occasions, both public and private, in which U.S. diplomats urged Japan and South Korea to reach an agreement like the one announced Monday.

The U.S. wasn’t a formal party to the talks, although Mr. Obama, Vice President Joe Biden,Mr. Kerry and other senior officials advised and supported both sides in reaching agreement in bilateral and trilateral meetings. “We’ve worked quietly, where possible, to prevent or resolve misunderstandings between the two,” a senior State Department official said.

The official said the U.S. sees the accord as being “as strategically consequential” as the 12-nation Trans-Pacific Partnership trade deal agreement reached in October, adding it would promote “a stable, prosperous and happy East Asia.”

The U.S. and Mr. Abe both want to form a stronger front against China, which has territorial ambitions in the region and has been building artificial islands to reinforce its claims in the South China Sea. Ms. Park has shown more sympathy to Beijing, appearing with Chinese President Xi Jinping at events denouncing Japan’s view of history.

The first major sign of progress came in November, when Mr. Abe and Ms. Park met in Seoul and agreed to seek an early resolution. Both sides had hoped for a deal in 2015, the 50th anniversary of the resumption of diplomatic ties.

Concern about business ties may have helped prompt Monday’s reconciliation. Between 2012 and 2014, two-way trade fell 17% and the number of Japanese travelers to Korea dropped 35%.

“Japanese companies have become reluctant to talk about their business in South Korea,” said Hidehiko Mukoyama, an analyst at Japan Research Institute. “They want to locate where they can operate most efficiently. But the disputes have made it difficult to do so.”

There are 46 elderly Korean “comfort women” known to be alive. No reliable records are known to exist on how many women were involved, but mainstream historians’ estimates range from 20,000 to 200,000. Former comfort women have consistently said females as young as teenagers were coerced or tricked into joining brothels serving Japanese soldiers.

The agreement marks a significant step, but it is too early to assess its impact, said Robert Kelly, a professor of political science at Pusan National University in South Korea.

“Historical grievances, particularly over the comfort women, are deeply ingrained in South Korea,” he said. “There will be a lot of people who won’t accept the deal.”

Disputes over other legacies of Japan’s 35-year colonization of the Korean Peninsula also hamper ties, including ongoing legal action by Koreans used as forced laborers by Tokyo, as well as descriptions in school textbooks in both countries of the colonial period, which ended in 1945.

Elements of Monday’s deal echo Japanese actions two decades ago. In 1993, Japan issued a statement extending its “sincere apologies and remorse” to the women, and later in the decade it established a fund to help the women. However, that fund used private donations.

—Felicia Schwartz in Washington contributed to this article.

http://www.wsj.com/articles/japan-south-korea-reach-comfort-women-agreement-1451286347

Structure of the Lead:

Who: sex slaves
Why:  a festering wound that has inflamed tensions between the U.S.’s two most important allies                   in Asia.
What: South Korea and Japan reached an agreement that aims to resolve a decades-old dispute                    over Korean women who were used as sex slaves by Japanese soldiers during World War II,
How: Under the accord, Japan will supply ¥1 billion ($8.3 million) in government funds to                            support the so-called comfort women. Japanese Prime Minister Shinzo Abe also apologized                for the women’s treatment, something he had been reluctant to do previously.
When: Dec. 28, 2015

Key Words:
1. inflamed:發炎的
2.denouncing: 譴責
3.reluctant:不情願
4.consistently: 始終如一
5.grievances: 委屈
6.resumption : 復牌
7.coerced:裹夾
8.squabbling: 爭吵
9.diplomatic:外交
10.reconciliation:和解