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從金·凱瑞的粉絲網(wǎng)站到Clubhouse

Jonathan Vanian
2021-09-11

羅漢·塞斯兼具產(chǎn)品和技術(shù)實力與創(chuàng)業(yè)的動力,這讓他進(jìn)入了今年的《財富》40位40歲以下商界精英榜單。

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當(dāng)奧普拉出現(xiàn)的時候,羅漢·塞斯意識到Clubhouse迎來了一個重要時刻。

2020年6月,脫口秀女王奧普拉現(xiàn)身塞斯參與創(chuàng)建的熱門社交媒體應(yīng)用程序Clubhouse,與作家和勵志演說家沙卡·桑戈爾一起討論刑事司法改革。雖然Clubhouse自2020年3月成立以來一直在穩(wěn)步發(fā)展,但它從來沒有像現(xiàn)在的知名互聯(lián)網(wǎng)初創(chuàng)公司當(dāng)初那樣掀起轟動。這對Clubhouse而言是一個至關(guān)重要的時刻,因為奧普拉無疑會提高這款應(yīng)用程序的知名度。Clubhouse有數(shù)以萬計的“聊天室”,其本質(zhì)上類似于直播播客。

但Clubhouse依舊規(guī)模不大。塞斯告訴《財富》雜志,該公司的員工只有他和聯(lián)合創(chuàng)始人及首席執(zhí)行官保羅·戴維森,以及來幫忙的“幾個人”。有三百人收聽了奧普拉與桑戈爾和其他人的交談,包括播客記者蓋爾·金和娛樂大亨邁克爾·奧維茨。兩位聯(lián)合創(chuàng)始人曾經(jīng)擔(dān)心,面對壓力,其服務(wù)可能出現(xiàn)技術(shù)問題。好在一切正常;奧普拉很滿意,這款應(yīng)用程序也沒有崩潰。

塞斯回憶說:“我記得我在聊天室關(guān)閉之后給保羅打電話說:‘服務(wù)器狀態(tài)良好。哇,這是一件大好事。’”

雖然塞斯說自己“并不是優(yōu)秀的工程師”,但這位技術(shù)專家肯定在某些方面做得不錯。分析公司Sensor Tower的手機洞察策略師斯蒂芬妮·陳解釋說,Clubhouse的每周活躍用戶增加到超過1000萬,但從未出現(xiàn)過任何重大的技術(shù)問題,值得注意的是,該平臺每天有70萬個聊天室在線。

斯蒂芬妮·陳認(rèn)為技術(shù)問題可能會迅速削弱新社交媒體服務(wù)的信譽。她說:“如果你的應(yīng)用漏洞百出,無法運行,難以使用,或者有隱私問題,那么它就會直接變成障礙?!?/p>

塞斯兼具產(chǎn)品和技術(shù)實力與創(chuàng)業(yè)的動力,這讓他進(jìn)入了今年的《財富》全球40位40歲以下商界精英榜單。他正在帶領(lǐng)近幾年來最熱議的消費者應(yīng)用程序之一,度過公司史上最重要的一年。據(jù)交易跟蹤服務(wù)PitchBook披露,投資者在這家初創(chuàng)公司投資超過3億美元,私人估值40億美元。

面對激烈的行業(yè)競爭,Clubhouse的未來前景依舊無法預(yù)測。Facebook、亞馬遜、Spotify等行業(yè)巨頭以及越來越多初創(chuàng)公司,正在逐步涉足音頻業(yè)務(wù)。

除了領(lǐng)導(dǎo)Clubhouse以外,塞斯和妻子還幫助創(chuàng)建了一家醫(yī)療保健非營利組織Lydian Accelerator,該組織是以他們患有遺傳病的女兒莉迪亞的名字命名。該組織的目標(biāo)是鼓勵全世界的科學(xué)家從事和分享大型制藥公司可能忽視的罕見遺傳病研究。

塞斯回憶說:“我們想道:‘我們創(chuàng)辦一家機構(gòu)吧?!覀冎肋@需要投入大量資金。我們可以為這家機構(gòu)籌錢,看看能夠為莉迪亞做些什么。’”

從金·凱瑞粉絲網(wǎng)站到Clubhouse

塞斯稱自己是一名“產(chǎn)品設(shè)計者”。他說自己總是對發(fā)明創(chuàng)造感興趣,他小時候在印度還做過木工活。13歲獲得第一臺計算機之后,他開始建網(wǎng)站,能夠與全世界的人們交流讓他著迷。

他創(chuàng)建的網(wǎng)站中,這兩個值得一提:一個是向20世紀(jì)90年代的經(jīng)典科幻劇集《X檔案》(The X-Files)致敬的網(wǎng)站,另外一個網(wǎng)站則是致敬喜劇演員金·凱瑞。塞斯說,他的同事偶爾依舊會拿他向《神探飛機頭》(Ace Ventura)的主演金·凱瑞致敬的粉絲網(wǎng)站取笑他。

說起最初他的網(wǎng)站傻乎乎的風(fēng)格,塞斯提到:“嗨,我是羅漢,今年13歲,金·凱瑞是我最喜歡的演員!”

2002年,塞斯從印度來到美國,在斯坦福大學(xué)學(xué)習(xí)計算機科學(xué),大學(xué)三年級在谷歌找到了一份工作。他曾經(jīng)在該搜索巨頭的多個項目擔(dān)任軟件工程師,包括支持手機用戶通過谷歌地圖查看和分享地理位置的Google Latitude功能。

2012年,塞斯離開谷歌創(chuàng)建了Memry Labs,負(fù)責(zé)多款社交應(yīng)用程序的開發(fā),但均未成功。支撐了幾年之后,他把這家公司賣給了房地產(chǎn)科技公司Opendoor,并在那里工作了幾年。但塞斯依舊渴望創(chuàng)業(yè),于是他找到了合伙人戴維森。戴維森曾經(jīng)開發(fā)過一款社交應(yīng)用程序Highlight,這款應(yīng)用程序最終被Pinterest收購。

塞斯說,兩人開始構(gòu)思創(chuàng)業(yè)想法的時候,并沒有想過涉足社交媒體,因為他們認(rèn)為創(chuàng)建一款熱門應(yīng)用程序非常困難。

塞斯說:“我們都不年輕。我有了一個女兒,他已經(jīng)有三個孩子。所以,讓我們做一些更可預(yù)測的事情。創(chuàng)建社交媒體并不是理性的選擇?!?/p>

但兩人最終還是決定涉足社交媒體,因為他們從亞馬遜的Alexa等語音數(shù)字助手、聯(lián)網(wǎng)智能音箱和蘋果的AirPods的日益流行中看到了音頻的崛起,他們認(rèn)為“拐點來臨”。他們最終想到了Clubhouse核心應(yīng)用程序,這款應(yīng)用程序支持人們聚會和社交,或者聽其他人講話,類似于在會上聽主講嘉賓演講一樣。

英國索爾福德大學(xué)的科學(xué)傳播與未來媒體系主任安迪·米亞教授將Clubhouse的崛起,歸功于新冠疫情期間的Zoom疲勞。米亞教授表示,Clubhouse不會對人們進(jìn)行在線廣告轟炸,這讓它在社交媒體應(yīng)用程序中脫穎而出。

米亞教授稱:“我認(rèn)為Clubhouse只是回歸了本源或者更美好的時代,當(dāng)時的互聯(lián)網(wǎng)讓人們可以不受干擾地相互交流?!?/p>

幫助莉迪亞,同時為其他人帶來希望

兩年前塞斯的女兒莉迪亞出生后,開始出現(xiàn)癲癇。他說,幾周后的基因檢測發(fā)現(xiàn),莉迪亞“有自發(fā)性基因突變,可能造成終生的嚴(yán)重身體和智力殘疾。

你知道,這對于初為人父人母的我們來說不啻為晴天霹靂。我和妻子的處理辦法是投入到研究當(dāng)中,希望弄清楚我們能夠為她做些什么?!?/p>

他說他們了解到“有一種技術(shù)可以在核糖核酸層面抑制部分基因突變?!比够貞浾f,他們詢問了專家為什么莉迪亞不能使用這種治療方法,專家們說“莉迪亞的基因突變過于罕見”,而且“除了她以外只有兩名患者有同樣的病癥?!?/p>

他說,他和妻子認(rèn)為把女兒的病癥描述為反常現(xiàn)象沒有道理。

塞斯說:“我們的DNA里有60億編碼,在統(tǒng)計學(xué)上任何突變都是罕見的。但加起來卻有幾百上千萬基因突變的患者。所以我們需要有一個平臺來解決每一種突變?!?/p>

塞斯和妻子最終了解到,有一位科學(xué)家的研究可能幫助治療莉迪亞的病癥。他說,雖然這項研究仍然處在早期階段,“但我認(rèn)為作為家長,你需要這樣的希望,對吧?”

他2019年全年都忙于Lydian Accelerator的工作,聯(lián)系到多位科學(xué)家和遺傳學(xué)家合作開展耗時漫長的試驗,從而進(jìn)一步了解這些罕見病。

塞斯表示:“雖然我們進(jìn)展順利,但到目前為止的進(jìn)度沒有達(dá)到我為莉迪亞設(shè)想的預(yù)期。這主要是因為生物學(xué)的發(fā)展速度比社交網(wǎng)絡(luò)更加緩慢。你需要進(jìn)行大量試錯?!?/p>

他希望Lydian Accelerator的任何研究成果和治療藥物能夠幫助新生兒,因為“這些治療方案往往在患者小時候更有效,比如剛出生幾天的時候。”

對于莉迪亞,塞斯說“她的智力可能只有6個月的水平”,雖然她不知道自己的名字,但她會對著父母微笑,表達(dá)開心的心情。

塞斯說,他和妻子通過研究發(fā)現(xiàn)了一種藥物,在莉迪亞4個月左右的時候曾經(jīng)給她服用過,他認(rèn)為這個藥物幫助改善了莉迪亞的生理發(fā)育。塞斯說,在服用這種藥物之前,他擔(dān)心莉迪亞是否可以“坐、爬或者走路”。

但這款藥物改變了莉迪亞的命運。

塞斯說:“兩個月后,她開始走路?!保ㄘ敻恢形木W(wǎng))

翻譯:劉進(jìn)龍

審校:汪皓

當(dāng)奧普拉出現(xiàn)的時候,羅漢·塞斯意識到Clubhouse迎來了一個重要時刻。

2020年6月,脫口秀女王奧普拉現(xiàn)身塞斯參與創(chuàng)建的熱門社交媒體應(yīng)用程序Clubhouse,與作家和勵志演說家沙卡·桑戈爾一起討論刑事司法改革。雖然Clubhouse自2020年3月成立以來一直在穩(wěn)步發(fā)展,但它從來沒有像現(xiàn)在的知名互聯(lián)網(wǎng)初創(chuàng)公司當(dāng)初那樣掀起轟動。這對Clubhouse而言是一個至關(guān)重要的時刻,因為奧普拉無疑會提高這款應(yīng)用程序的知名度。Clubhouse有數(shù)以萬計的“聊天室”,其本質(zhì)上類似于直播播客。

但Clubhouse依舊規(guī)模不大。塞斯告訴《財富》雜志,該公司的員工只有他和聯(lián)合創(chuàng)始人及首席執(zhí)行官保羅·戴維森,以及來幫忙的“幾個人”。有三百人收聽了奧普拉與桑戈爾和其他人的交談,包括播客記者蓋爾·金和娛樂大亨邁克爾·奧維茨。兩位聯(lián)合創(chuàng)始人曾經(jīng)擔(dān)心,面對壓力,其服務(wù)可能出現(xiàn)技術(shù)問題。好在一切正常;奧普拉很滿意,這款應(yīng)用程序也沒有崩潰。

塞斯回憶說:“我記得我在聊天室關(guān)閉之后給保羅打電話說:‘服務(wù)器狀態(tài)良好。哇,這是一件大好事?!?/p>

雖然塞斯說自己“并不是優(yōu)秀的工程師”,但這位技術(shù)專家肯定在某些方面做得不錯。分析公司Sensor Tower的手機洞察策略師斯蒂芬妮·陳解釋說,Clubhouse的每周活躍用戶增加到超過1000萬,但從未出現(xiàn)過任何重大的技術(shù)問題,值得注意的是,該平臺每天有70萬個聊天室在線。

斯蒂芬妮·陳認(rèn)為技術(shù)問題可能會迅速削弱新社交媒體服務(wù)的信譽。她說:“如果你的應(yīng)用漏洞百出,無法運行,難以使用,或者有隱私問題,那么它就會直接變成障礙?!?/p>

塞斯兼具產(chǎn)品和技術(shù)實力與創(chuàng)業(yè)的動力,這讓他進(jìn)入了今年的《財富》全球40位40歲以下商界精英榜單。他正在帶領(lǐng)近幾年來最熱議的消費者應(yīng)用程序之一,度過公司史上最重要的一年。據(jù)交易跟蹤服務(wù)PitchBook披露,投資者在這家初創(chuàng)公司投資超過3億美元,私人估值40億美元。

面對激烈的行業(yè)競爭,Clubhouse的未來前景依舊無法預(yù)測。Facebook、亞馬遜、Spotify等行業(yè)巨頭以及越來越多初創(chuàng)公司,正在逐步涉足音頻業(yè)務(wù)。

除了領(lǐng)導(dǎo)Clubhouse以外,塞斯和妻子還幫助創(chuàng)建了一家醫(yī)療保健非營利組織Lydian Accelerator,該組織是以他們患有遺傳病的女兒莉迪亞的名字命名。該組織的目標(biāo)是鼓勵全世界的科學(xué)家從事和分享大型制藥公司可能忽視的罕見遺傳病研究。

塞斯回憶說:“我們想道:‘我們創(chuàng)辦一家機構(gòu)吧?!覀冎肋@需要投入大量資金。我們可以為這家機構(gòu)籌錢,看看能夠為莉迪亞做些什么?!?/p>

從金·凱瑞粉絲網(wǎng)站到Clubhouse

塞斯稱自己是一名“產(chǎn)品設(shè)計者”。他說自己總是對發(fā)明創(chuàng)造感興趣,他小時候在印度還做過木工活。13歲獲得第一臺計算機之后,他開始建網(wǎng)站,能夠與全世界的人們交流讓他著迷。

他創(chuàng)建的網(wǎng)站中,這兩個值得一提:一個是向20世紀(jì)90年代的經(jīng)典科幻劇集《X檔案》(The X-Files)致敬的網(wǎng)站,另外一個網(wǎng)站則是致敬喜劇演員金·凱瑞。塞斯說,他的同事偶爾依舊會拿他向《神探飛機頭》(Ace Ventura)的主演金·凱瑞致敬的粉絲網(wǎng)站取笑他。

說起最初他的網(wǎng)站傻乎乎的風(fēng)格,塞斯提到:“嗨,我是羅漢,今年13歲,金·凱瑞是我最喜歡的演員!”

2002年,塞斯從印度來到美國,在斯坦福大學(xué)學(xué)習(xí)計算機科學(xué),大學(xué)三年級在谷歌找到了一份工作。他曾經(jīng)在該搜索巨頭的多個項目擔(dān)任軟件工程師,包括支持手機用戶通過谷歌地圖查看和分享地理位置的Google Latitude功能。

2012年,塞斯離開谷歌創(chuàng)建了Memry Labs,負(fù)責(zé)多款社交應(yīng)用程序的開發(fā),但均未成功。支撐了幾年之后,他把這家公司賣給了房地產(chǎn)科技公司Opendoor,并在那里工作了幾年。但塞斯依舊渴望創(chuàng)業(yè),于是他找到了合伙人戴維森。戴維森曾經(jīng)開發(fā)過一款社交應(yīng)用程序Highlight,這款應(yīng)用程序最終被Pinterest收購。

塞斯說,兩人開始構(gòu)思創(chuàng)業(yè)想法的時候,并沒有想過涉足社交媒體,因為他們認(rèn)為創(chuàng)建一款熱門應(yīng)用程序非常困難。

塞斯說:“我們都不年輕。我有了一個女兒,他已經(jīng)有三個孩子。所以,讓我們做一些更可預(yù)測的事情。創(chuàng)建社交媒體并不是理性的選擇?!?/p>

但兩人最終還是決定涉足社交媒體,因為他們從亞馬遜的Alexa等語音數(shù)字助手、聯(lián)網(wǎng)智能音箱和蘋果的AirPods的日益流行中看到了音頻的崛起,他們認(rèn)為“拐點來臨”。他們最終想到了Clubhouse核心應(yīng)用程序,這款應(yīng)用程序支持人們聚會和社交,或者聽其他人講話,類似于在會上聽主講嘉賓演講一樣。

英國索爾福德大學(xué)的科學(xué)傳播與未來媒體系主任安迪·米亞教授將Clubhouse的崛起,歸功于新冠疫情期間的Zoom疲勞。米亞教授表示,Clubhouse不會對人們進(jìn)行在線廣告轟炸,這讓它在社交媒體應(yīng)用程序中脫穎而出。

米亞教授稱:“我認(rèn)為Clubhouse只是回歸了本源或者更美好的時代,當(dāng)時的互聯(lián)網(wǎng)讓人們可以不受干擾地相互交流?!?/p>

幫助莉迪亞,同時為其他人帶來希望

兩年前塞斯的女兒莉迪亞出生后,開始出現(xiàn)癲癇。他說,幾周后的基因檢測發(fā)現(xiàn),莉迪亞“有自發(fā)性基因突變,可能造成終生的嚴(yán)重身體和智力殘疾。

你知道,這對于初為人父人母的我們來說不啻為晴天霹靂。我和妻子的處理辦法是投入到研究當(dāng)中,希望弄清楚我們能夠為她做些什么。”

他說他們了解到“有一種技術(shù)可以在核糖核酸層面抑制部分基因突變。”塞斯回憶說,他們詢問了專家為什么莉迪亞不能使用這種治療方法,專家們說“莉迪亞的基因突變過于罕見”,而且“除了她以外只有兩名患者有同樣的病癥?!?/p>

他說,他和妻子認(rèn)為把女兒的病癥描述為反?,F(xiàn)象沒有道理。

塞斯說:“我們的DNA里有60億編碼,在統(tǒng)計學(xué)上任何突變都是罕見的。但加起來卻有幾百上千萬基因突變的患者。所以我們需要有一個平臺來解決每一種突變?!?/p>

塞斯和妻子最終了解到,有一位科學(xué)家的研究可能幫助治療莉迪亞的病癥。他說,雖然這項研究仍然處在早期階段,“但我認(rèn)為作為家長,你需要這樣的希望,對吧?”

他2019年全年都忙于Lydian Accelerator的工作,聯(lián)系到多位科學(xué)家和遺傳學(xué)家合作開展耗時漫長的試驗,從而進(jìn)一步了解這些罕見病。

塞斯表示:“雖然我們進(jìn)展順利,但到目前為止的進(jìn)度沒有達(dá)到我為莉迪亞設(shè)想的預(yù)期。這主要是因為生物學(xué)的發(fā)展速度比社交網(wǎng)絡(luò)更加緩慢。你需要進(jìn)行大量試錯?!?/p>

他希望Lydian Accelerator的任何研究成果和治療藥物能夠幫助新生兒,因為“這些治療方案往往在患者小時候更有效,比如剛出生幾天的時候?!?/p>

對于莉迪亞,塞斯說“她的智力可能只有6個月的水平”,雖然她不知道自己的名字,但她會對著父母微笑,表達(dá)開心的心情。

塞斯說,他和妻子通過研究發(fā)現(xiàn)了一種藥物,在莉迪亞4個月左右的時候曾經(jīng)給她服用過,他認(rèn)為這個藥物幫助改善了莉迪亞的生理發(fā)育。塞斯說,在服用這種藥物之前,他擔(dān)心莉迪亞是否可以“坐、爬或者走路”。

但這款藥物改變了莉迪亞的命運。

塞斯說:“兩個月后,她開始走路?!保ㄘ敻恢形木W(wǎng))

翻譯:劉進(jìn)龍

審校:汪皓

Rohan Seth realized that Clubhouse was having a moment when Oprah showed up.

It was June 2020 when the queen of talk took to Clubhouse, the hot social media app Seth cofounded, to discuss criminal justice reform with author and motivational speaker Shaka Senghor. Although Clubhouse had grown steadily since its debut in March 2020, it wasn’t attracting the kind of buzz that other now well-known Internet startups had over the years. It was a pivotal moment for Clubhouse because Oprah would undoubtedly draw attention to the app, which powers hundreds of thousands of “rooms” for what are essentially live podcasts.

But Clubhouse was still tiny. The only employees were Seth and cofounder and CEO Paul Davison, plus a “couple of folks” who were helping out, Seth told Fortune. Three hundred people listened to Oprah powwow with Senghor and others including broadcast journalist Gayle King and entertainment mogul Michael Ovitz. The two cofounders were worried the service might crumble under pressure, technically speaking. Thankfully, there were no problems; Oprah was pleased, and the app didn’t crash.

“I remember calling Paul after the room ended and was like, ‘The servers are good. Wow this is such a great thing,’” Seth recalled.

Although Seth said he’s “not a great engineer,” the technologist must be doing something right. That Clubhouse hasn’t experienced any major technical hiccups since ballooning to over 10 million weekly active users and hosting 700,000 rooms daily is noteworthy, explained Stephanie Chan, a mobile insights strategist at analytics firm Sensor Tower.

“If your app is buggy—it doesn’t work, it’s difficult to use, and there’s privacy concerns—that’s a lot more of an immediate block,” Chan said about how tech problems could quickly tarnish the reputations of new social media services.

Seth’s combination of product and tech chops coupled with an entrepreneurial drive helped get him on Fortune’s annual 40 Under 40 list. He’s helping steer one of the most talked-about consumer apps in recent years at a crucial time in its history. Investors have plunked over $300 million in the startup, which now has a private valuation of $4 billion, according to deal-tracking service PitchBook.

Still, Clubhouse faces an unpredictable future in a fiercely competitive industry. Giants like Facebook, Amazon, Spotify, and a growing roster of startups are increasingly stepping on its audio turf.

Besides leading Clubhouse, Seth and his wife helped create the Lydian Accelerator health care nonprofit, named after his daughter, Lydia, who has a genetic disease. The accelerator’s goal is to encourage scientists worldwide to work on and share research about uncommon genetic disorders that major pharmaceutical companies may overlook.

“We said, ‘Let’s try to start an organization,’” Seth recalled. “‘We know it’s gonna be expensive. Let’s raise money for it, and let’s figure out how do we do something for Lydia.’”

From a Jim Carrey fan site to Clubhouse

A self-described “product builder,” Seth said he was always interested in creating things, and he remembered doing carpentry as a child in India, where he grew up. After he got his first computer at 13, he said he started building websites and was captivated by the idea that he could connect with people all around the world.

Two websites stand out from his past: One was dedicated to the 1990s science-fiction cult hit The X-Files, and the other was a shrine to the comedian and actor Jim Carrey. Seth said his colleagues still occasionally rib him for his fan site in tribute to the Ace Ventura star.

“Hi, I’m Rohan. I’m 13 years old, and Jim Carrey is my favorite actor!” Seth said of his website’s dork quotient at the time.

In 2002, Seth left India for the U.S. to study computer science at Stanford University and got a job at Google during his junior year. At the search giant, he worked as a software engineer on several projects, including the Google Latitude feature that let mobile users view and share their location with others through Google Maps.

In 2012, Seth left Google to build his own startup, Memry Labs, where he oversaw the development of several social apps that never caught on. After a few years of tinkering, he sold the company to the real estate tech firm Opendoor, where he worked for a few years. Still, Seth yearned to create another startup, and he found a partner in Davison, who had built a social app called Highlight, which was eventually acquired by Pinterest.

When the two started brainstorming startup ideas, they didn’t want anything to do with social media, Seth said, citing the difficulty of creating a buzzy app.

“We’re both old. I’ve got a daughter, he’s got three kids,” Seth said. “And, you know, let’s do something a little bit more predictable. It’s not rational to work on social.”

But the duo ultimately decided to tackle social media after noting the rise of audio, which they felt “was at this inflection point” thanks to voice-activated digital assistants like Amazon’s Alexa, Internet-connected smart speakers, and the growing popularity of Apple’s AirPods. The two eventually came up with the idea of the core Clubhouse app, where people could gather and network, or listen to others talk as if they were conference keynote speakers.

Andy Miah, a professor and chair in science communication and future media at the University of Salford, in the U.K., credits Zoom fatigue during the COVID-19 era as contributing to Clubhouse’s ascent. That Clubhouse doesn’t bombard people with online ads also helps the service stand out from other social media apps, Miah said.

“I think Clubhouse just harkens back to maybe a more naive or perhaps a better time when the Internet was about just talking to each other without interference,” Miah said.

Helping Lydia and giving hope to others

After Seth’s daughter, Lydia, was born two and a half years ago, she began having seizures. A genetic test a few weeks later found that Lydia “had a spontaneous mutation in a gene that would cause severe lifelong physical and mental disabilities,” he said.

“It’s devastating as parents, you know, first-time parents,” Seth said. “My wife and my way of coping with it was throwing ourselves into the research and trying to understand what can we do.”

He said they learned that “there was actually technology that existed that could silence some of these mutations at the RNA level.” When they asked experts about why the possible treatment was unavailable for Lydia, Seth recalled they would tell him that “Lydia’s mutation is too rare” and that there were “only two other patients with her mutation.”

He added that it didn't make sense to him and his wife to describe the disorder as an anomaly.

"There are 6 billion characters of code in our DNA, any mutation in them was statistically likely to be rare," Seth said. "But collectively there are millions. We needed to have a platform approach to fix each mutation."

Seth and his wife eventually learned that there was a scientist working on research that could help Lydia’s disorder. Although the research was still early, “I think that’s all the hope that you need as a parent, right?” he said.

He spent all of 2019 working on the Lydian Accelerator, establishing connections with more scientists and geneticists who could team up and conduct the time-consuming experiments needed to learn more about these rare disorders.

“We have a good process, but we’re certainly behind in terms of what I hope we would have had for Lydia by now,” Seth said. “And most of that was because biology is slower than social networks. There’s a lot of trial and error.”

He’s hopeful that any research and treatments that sprout from the Lydian Accelerator will help newborns, because “the advantage of these solutions usually happens when you’re really young, like days of life.”

As for Lydia, she is “probably operating at about a 6-month-old, mentally,” and although she doesn’t know her name, she smiles at her parents and expresses happiness, Seth said.

Through their research, Seth said he and his wife found a drug that they administered to Lydia when she was around 4 months old, which he attributed to helping improve her physical development. Prior to the drug, Seth said he didn’t know if Lydia would be able “to sit, crawl, walk—any of those things.”

But the treatment, he said, has been a game changer for Lydia.

“She started walking a couple of months ago,” Seth said.

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