【從3千塊開戶到8千名病友，罕病家庭30年的倡議長跑】Podcast

 

報導者 The Reporter 

  · 

#Podcast【從3千塊開戶到8千名病友，罕病家庭30年的倡議長跑】

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今天是2月29日，每逢閏年才會在日曆上出現的這個日期，是 #國際罕病日。就像這天始終存在、大部分時候卻被視而不見，#罕見疾病 患者的醫療權益與社會支持，也長期因為人數少、議題能見度低而時常被忽略。

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罹患罕見疾病「脊髓性肌肉萎縮症」（#SMA）的台灣律師 #陳俊翰 是近期的例外。在不分區立委提名、被脫口秀模仿等輿論風波後，他豁達大度的回應，成功喚醒社會對 #罕病 族群的關注與尊敬；然而沒被嘲諷訕笑擊倒的他，卻被一場感冒意外帶走，也象徵著罕病患者強韌的心與脆弱的生命。

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「當在選戰話題的漫天煙火裡面，我們連一支仙女棒都得不到的時候，他是把自己燃燒、變成一把人權的火炬⋯⋯」

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談到陳俊翰離世前演說仍不忘讓社會看見罕病族群，罕病基金會創辦人 #陳莉茵 在節目中難掩不捨；她敬佩陳俊翰的努力與家人的辛勞，讓陳俊翰宛如「奇蹟般的存在」成為罕病大家庭的精神標竿，但也因此一時之間難以接受突如其來的噩耗。

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不過，這樣的衝擊，卻是罕病基金會無可迴避的日常。同為創辦人的 #曾敏傑 表示，20幾年來，基金會協助過的病友達8千多位，其中四分之一以上都已在服務過程中離世。即便近年來，對於罕病的科學研究與基因治療頗有斬獲，但直到現在，仍有許多病友還在等待新藥上市、藥物審核，或在日漸緊縮的健保財務中冀望不被遺落。

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延伸閱讀：

【曾是聯合國認可的罕病人權大國，為何台灣今讓患者淪落健保邊緣人？】https://bit.ly/3wzPtol

【「特管法」漏接的「人球」──SMA新生兒篩檢停擺、4千萬新藥病兒恐用不到】https://bit.ly/3SRnOGO

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縱使倡議仍在路上，台灣如今能出現「陳俊翰」或眾多病友充滿可能性的生命實踐，卻絕非理所當然。

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回到大眾對罕病還極為陌生的20多年前，都育有罕見代謝疾病孩子的陳莉茵、曾敏傑兩人，在各自奔忙求診之外，因為私下「借藥」救兒相識，決定創立罕見疾病基金會，組織起多年來無人聞問、自力救濟的病友與家庭，走上社會倡議、推動立法、與政府既要抗爭又需合作的漫漫長路，為台灣罕病權益立下諸多領先國際的里程碑。

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從僅有3000多元的開戶基金，到如今成為政府建立罕病制度的重要協力者，他們不曾收過政府補助，而是開記者會、做公益串連來爭取社會支持，組合唱團、開繪畫班為家屬找到喘息空間，也協助病友自我實踐。

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在這集節目，你將聽到在醫療線一路見證罕病倡議的惠君，訪談兩位爸爸、媽媽從自助、助人，到面向大眾的故事。在國際罕病日這天，他們仍要繼續訴說陳俊翰努力推進直到生命終點的議題，並持續呼告：罕見疾病不是無可奈何的不幸他者，而是關乎我們每一個人。

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Podcast收聽連結（記得訂閱，可以更早收到更新！）：

SoundOn：https://bit.ly/3V07DtC

Spotify：https://bit.ly/3IfNub4

Apple podcast：https://bit.ly/42ZufvZ

Google podcast：https://bit.ly/42VT6Rs

KKBOX：https://bit.ly/3wDvepS

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2525

Lynda and Stewart Resnick. $580 million gifts,

 

Giving Big, a California Couple Gets Gratitude and Scrutiny

Lynda and Stewart Resnick have directed their pistachio fortune toward large, transformational gifts, but also drawn some criticism for their water use in an often parched state.

The philanthropist Lynda Resnick in a garden at the Wonderful College Prep Academy in Lost Hills., Calif., a charter school she and her husband, Stewart, support as part of the $580 million they have given to programs in the Central Valley, where many of their employees live.Credit...Adam Amengual for The New York Times

By Robin Pogrebin

Reporting from Los Angeles, Lost Hills and Delano, Calif.

Feb. 26, 2024, 5:00 a.m. ET

Standing on the grand staircase of Lynda and Stewart Resnick's opulent Beverly Hills mansion at a party last fall — where Diane Keaton, Bob Iger and Brian Grazer were among the luminaries making small talk over crudités and Sazerac cocktails — the author Walter Isaacson took a moment to thank his hosts.

Not only were the Resnicks giving the party to celebrate his new biography of Elon Musk, they had also been major supporters of his former professional home, the Aspen Institute, donating $36 million to the think tank over the years.

Recall alert: At least 11 people in nine states have been infected in a salmonella outbreak linked to pistachios, the CDC says.

記得通知: 至少11人在九美國一直在一個沙門氏菌感染疫情連結到pistachios, CDC說.

Packing your bags? A tiny Nova Scotia isle is ready to take you in.

Nova Scotia isle: Move here if Trump is elected

The possibility of a Trump presidency is moving from the laughable to possible.

USATODAY.COM

阿月渾子（學名：Pistacia vera，英語：Pistachios），最早的商品名是開口笑，形容其硬殼裂開如笑容之狀，但迅速被更口語化的開心果取代，是一種常見乾果，是漆樹科黃連木屬的植物。開心果營養豐富，味道可口，是很受歡迎的堅果類零食。富含維生素A、維生素E，能提高免疫力、增強體質。

開心果
開心果的成熟果實
科學分類
界：	植物界 Plantae
演化支：	維管束植物 Tracheophyta
演化支：	被子植物 Angiosperms
演化支：	真雙子葉植物 Eudicots
演化支：	薔薇類植物 Rosids
目：	無患子目 Sapindales
科：	漆樹科 Anacardiaceae
屬：	黃連木屬 Pistacia
種：	開心果 P. vera
二名法
Pistacia vera L.

開心果（學名：Pistacia vera，英語：pistachio）是一種常見乾果，正式名稱為阿月渾子，是漆樹科黃連木屬的植物。開心果營養豐富，味道可口，是很受歡迎的零食。最早的漢語商品名是開口笑，形容其硬殼裂開如笑容之狀，但迅速被更口語化的開心果取代。富含維生素A、維生素E。

reticule

n. - 手提袋, 網袋, 細十字線
Meaning #1: a woman's drawstring handbag; usually made of net or beading or brocade; used in 18th and 19th centuries
Meaning #2: a network of fine lines, dots, cross hairs, or wires in the focal plane of the eyepiece of an optical instrument
Synonyms: reticle, graticule

ret・i・cule

━━ n. （網製）手さげ袋; 【コンピュータ】レティクル ((ICの回路パターンの焼き付けられた原版)).
ridicule
noun [U]
unkind words or actions that make someone or something look stupid or worthless:
She was treated with scorn and ridicule by her colleagues when she applied for the job.
He's become an object of ridicule (= a person that everyone thinks is stupid and criticizes or laughs at).

ridicule
verb [T]
to laugh at someone in an unkind way:
She rarely spoke her mind out of fear of being ridiculed.
At the time he was ridiculed for his ideas.

ridiculous
adjective
stupid or unreasonable and deserving to be laughed at:
Do I look ridiculous in this hat?
Don't be so ridiculous! I can't possibly afford to go on holiday.
It's ridiculous to expect a two-year-old to be able to read!

ridiculously
adverb
Hotel rooms in the city are ridiculously overpriced during the festival.



2004

rl
21:15 2004/6/4
ridicule
可別被戲弄了
…
ridicule ['rıdıֽkjuːl]
noun
1 language or behaviour intended to humiliate or mock; derision
verb
2 [transitive] to make fun of, mock, or deride
[ETYMOLOGY: 17th Century: from French, from Latin ridiculus, from ridere to laugh]
2009 hc
French, from Latin rīdiculum, joke, from neuter of rīdiculus, laughable. See ridiculous.]

'ridi"culer noun

…
ridicule [ʀidikyl]
adjectif
ridiculous
nom masculin
ridiculousness nom non comptable
…
reticule ['rɛtıˌkjuːl]
noun
1 (in the 18th and 19th centuries) a woman's small bag or purse, usually in the form of a pouch with a drawstring and made of net, beading, brocade, etc.
2 a variant of: reticle
[ETYMOLOGY: 18th Century: from French réticule, from Latin reticulum RETICLE]

……
Emma saw symptoms of it immediately in the expression of her face; and while paying her own compliments to Mrs. Bates, and appearing to attend to the good old lady's replies, she saw her with a sort of anxious parade of mystery fold up a letter which she had apparently been reading aloud to Miss Fairfax, and return it into the purple and gold ridicule by her side, saying, with significant nods, ……
- Jane Austen: Emma Vol.3, Ch.16

……
《艾瑪》卷三第十六章裡這段用了一個很奇怪的字：ridicule，若照線上The Collins English Dictionary 所提供的有限解釋，或一般的英漢大辭典，可能無法理解奧斯汀在描述什麼。儘管辭典上已經說明了它的字源來自法文和拉丁文，但是奧斯汀在這裡用的其實是法文ridicule的另一種意義，它的意思相當於 reticule，也是源自法文拼法稍有差別的réticule。
查清楚，可別被戲弄了。