Plunge for Elodie Raises $2.5M+ for Life-Saving Rare Disease Research in Just 7 Years
Plunge for Elodie Raises $2.5M+ for Life-Saving Rare Disease Research in Just 7 Years
Celebrities, sports teams, schools and supporters across 20+ locations worldwide take polar plunges to raise awareness and funds for rare genetic skin disorder called EB
全球20多個地點的名人、運動隊、學校和支持者進行極地衝擊，以提高人們對名爲EB的罕見遺傳性皮膚病的認識和資金
NEW YORK, May 7, 2024 /PRNewswire/ -- From the shores of Wellesley, Massachusetts to the cold tubs of Adelaide, Australia the 7th annual Plunge For Elodie took the world by storm in April in order to raise awareness and funds for rare genetic disease called Epidermolysis Bullosa, or EB, and EB Research Partnership (EBRP).
紐約，2024 年 5 月 7 日 /PRNewswire/ — 從馬薩諸塞州韋爾斯利海岸到澳大利亞阿德萊德的冷水浴池——第七屆年度盛會 爲艾洛迪跳水 爲了提高人們對名爲 Epidermolysis Bullosa（簡稱 EB）的罕見遺傳病的認識和資金，在四月份席捲全球 EB 研究夥伴關係 (EBRP)。
Plunge for Elodie Raises $2.5M+ for Life-Saving Rare Disease Research in just 7 years.
Plunge for Elodie在短短7年內爲挽救生命的罕見病研究籌集了超過250萬美元的資金。
The Plunge was started by 10 childhood friends of Elodie's mom, EBRP Board Member Emily Kubik. Elodie was born in 2016 with a severe form of EB. She is one of 500,000 people around the world suffering from EB, and faces a life expectancy of just 30 years. Children with EB are called "Butterfly Children'' because their skin is as fragile as the wings of a butterfly. They face severe pain, open external and internal wounds, and a grueling daily bandaging process.
Plunge 由 Elodie 的媽媽、EBRP 董事會成員 Emily Kubik 的 10 個兒時好友發起。埃洛迪出生於 2016 年，患有嚴重的 EB。她是全球50萬EB患者中的一員，預期壽命僅爲30年。患有 EB 的孩子被稱爲 “蝴蝶孩子”，因爲他們的皮膚像蝴蝶的翅膀一樣脆弱。他們面臨劇烈的疼痛、開放的外部和內部傷口以及艱苦的日常包紮過程。
In 2024 alone the Plunge for Elodie raised more than $530,000 to fund life-saving research. This year's efforts have helped the event's fundraising total surpass $2.5M raised since 2018.
僅在2024年，Plunge for Elodie就籌集了超過53萬美元的資金，用於資助救生研究。今年的努力使該活動的籌款總額超過了自2018年以來籌集的250萬美元。
"With the first FDA-approved EB treatments coming in 2023, the huge global growth of the Plunge for Elodie, and the incredible amount of momentum behind EB research – my family is filled with so much hope. I am so proud of Elodie for being brave enough to share her story and inspire so many. I'm also so grateful for every single person who has joined us in this fight. Your donations, shares, fundraising efforts and plunges are truly making an impact and we will not stop until there is a cure for EB," says Emily Kubik, Elodie's mom and EB Research Partnership Board Member.
“隨着FDA批准的首批EB療法將於2023年問世，Elodie的Plunge在全球的巨大增長，以及Eb研究背後的驚人勢頭——我的家人充滿了希望。我爲 Elodie 勇敢地分享她的故事並激勵了這麼多人而感到非常自豪。我也非常感謝每一個加入我們這場戰鬥的人。你的捐款、股票、籌款活動和暴跌確實在產生影響，在EB找到治癒方法之前，我們不會停下來。” Elodie的媽媽兼EB研究夥伴關係董事會成員艾米麗·庫比克說。
Supporters, EB families, advocates, and ambassadors alike took the #PlungeforElodie this year to make it an incredibly special and successful campaign. Some highlights were...
支持者、EB家族、倡導者和大使都參加了今年的 #PlungeforElodie 活動，使其成爲一項非常特別且成功的競選活動。一些亮點是...
- The Plunge for Elodie campaign raised +$530,000 in 2024 alone, and was proudly supported by corporate sponsors including the first-ever Presenting Sponsor, CSI Pharmacy, and five generous Title Sponsors, Abeona Therapeutics, Belkin Family Lookout Farm, Dellbrook JKS, iHeartMedia and Sohpia's Hope to Cure EB.
- The Plunge for Elodie made its way down under and around the world with plunges taking place in Adelaide, Melbourne, Toronto, Okinawa and the U.K.
- EBRP Co-Founders, Jill and Eddie Vedder, hosted a Plunge to support the cause alongside a young boy living with EB named Patterson, hundreds of local supporters and friends in Seattle joined in and jumped into the chilly waters of Alki Beach.
- From TikTok stars Luke & Sassy Scott to AFL legend and Australian ambassador Jonathan Brown, former MLB All Star Sean Casey and musicians like Raynes and Hooked Like Helen, many ambassadors, athletes, musicians and teams took the Plunge to support EB.
- The 3rd Annual Sophia's Hope Award was presented to Erika Tarantal for her unwavering support and dedication to the cause and EB community. This award celebrates the memory of Sophia Grace Ramsey, a one-year-old who tragically lost her battle with EB in May 2020.
- 僅在2024年，Plunge for Elodie活動就籌集了53萬多美元，並自豪地得到了企業贊助商的支持，其中包括有史以來第一個主辦贊助商CSI Pharmacy和五位慷慨的冠名贊助商、Abeona Therapeutics、Belkin Family Lookout Farm、Dellbrook JKS、iHeartMedia和索菲亞的Hope to Cure EB公司。
- 隨着阿德萊德、墨爾本、多倫多、沖繩和英國的暴跌，Elodie 的 Plunge for Elodie 進入了地下和世界各地。
- EBRP聯合創始人吉爾和埃迪·維德與一個名叫帕特森的EBRP小男孩一起舉辦了一次跳水活動，以支持這項事業，西雅圖的數百名當地支持者和朋友加入並跳入了寒冷的阿爾基海灘水域。
- 從抖音明星盧克和薩西·斯科特到美國橄欖球聯盟傳奇人物和澳大利亞大使喬納森·布朗，前美國職業棒球大聯盟全明星肖恩·凱西以及像雷恩斯和Hooked Like Helen這樣的音樂家，許多大使、運動員、音樂家和團隊全力支持EB。
- 第三屆年度索菲亞希望獎頒發給了埃裏卡·塔蘭塔爾，以表彰她對事業和EB社區的堅定支持和奉獻。該獎項旨在紀念索菲亞·格雷斯·拉姆齊，她是一歲的孩子，在2020年5月不幸輸掉了與EB的戰鬥。
"The amount of support we've received over the years has created momentum and gotten us to where we are today. I'm so genuinely proud and grateful for how our community continues to rally around this cause. The two FDA-approved treatments in 2023 would not be possible without support like this. And we will continue to work alongside this community until there is a cure for EB – and beyond," says Jill Vedder, Co-Founder and Chairwoman, EB Research Partnership.
“多年來我們獲得的大量支持創造了動力，使我們達到了今天的水平。我們的社區繼續團結在這一事業周圍，我感到非常自豪和感激。沒有這樣的支持，2023年美國食品藥品管理局批准的兩種治療方法是不可能的。我們將繼續與這個社區合作，直到找到治癒埃博拉病的方法——甚至更多。” EB Research Partnership 聯合創始人兼主席吉爾·維德說。
All proceeds from the Plunge for Elodie go directly to EB Research Partnership. Since 2010, EB Research Partnership (EBRP) has raised over $60 million, funding more than 140 projects and effectively transforming the EB clinical trial landscape. From 2 clinical trials to over 40, including 2 FDA approved treatments, there has been remarkable progress made towards a cure for EB.
Plunge for Elodie 的所有收益將直接捐給 EB 研究合作伙伴關係。自2010年以來，EB研究夥伴關係（EBRP）已籌集了超過6000萬美元，資助了140多個項目，並有效地改變了EB臨床試驗格局。從2項臨床試驗到40多項試驗，包括2種FDA批准的治療方法，在治療EB方面取得了顯著進展。
More information on how to donate and get involved can be found at . You can also follow @plungeforelodie and @ebresearch on Instagram and Facebook.
有關如何捐款和參與的更多信息，請訪問 。你也可以在 Instagram 和臉書上關注 @plungeforelodie 和 @ebresearch。
About EB Research Partnership
Founded in 2010 by a dedicated group of parents along with Jill and Eddie Vedder of Pearl Jam, EB Research Partnership (EBRP) is the largest global nonprofit dedicated to funding research aimed at treating and ultimately curing Epidermolysis Bullosa (EB), a group of devastating and life-threatening skin disorders that affect children from birth.
關於 EB 研究夥伴關係
EB Research Partnership（EBRP）由一群敬業的家長與Pearl Jam的Jill和Eddie Vedder於2010年創立，是最大的全球非營利組織，致力於資助旨在治療並最終治癒大皰性表皮鬆解症（EB）的研究，這是一組從出生起就影響兒童的毀滅性和危及生命的皮膚病。
Working around the clock with offices in the US and Australia, EBRP utilizes an innovative venture philanthropy business model. When making a grant to a research project, they retain the added upside of generating a recurring revenue stream if the therapy or product is commercially successful, then use the return on investment to fund additional EB research until a cure is found.
EBRP在美國和澳大利亞設有辦事處，全天候運用創新的風險慈善商業模式。在爲研究項目提供資助時，如果療法或產品在商業上取得成功，他們會保留創造經常性收入來源的額外上升空間，然後使用投資回報爲額外的EB研究提供資金，直到找到治療方法。
To learn more, visit
要了解更多信息，請訪問
About the Plunge for Elodie
Named after 7-year-old Elodie Kubik, who lives with a severe form of EB, the Plunge began as a local effort in Massachusetts, organized by childhood friends of Elodie's mom. They wanted to do more for the family than just offer emotional support. Thus, the first Plunge for Elodie took place in 2018.
關於 Elodie 的 Plunge
Plunge以7歲的埃洛迪·庫比克的名字命名，他患有嚴重的EB，最初是馬薩諸塞州的一項當地活動，由埃洛迪媽媽兒時的朋友組織。他們想爲家庭做更多的事情，而不僅僅是提供情感支持。因此，Elodie的第一次跳水發生在2018年。
Since 2018 the Plunge has raised over $2.5M for life-saving EB research and reached thousands across the globe. In 2024, there were 20+ Plunges for Elodie worldwide including in New York, Massachusets, North Carolina, Nashville, Melbourne, Seattle, Okinawa, and more!
自2018年以來，Plunge已爲拯救生命的EB研究籌集了超過250萬美元，並惠及全球數千人。2024年，Elodie在全球範圍內經歷了20多次暴跌，包括紐約、馬薩諸塞州、北卡羅來納州、納什維爾、墨爾本、西雅圖、沖繩等！
To learn more, visit
要了解更多信息，請訪問
SOURCE EB Research Partnership
來源 EB 研究夥伴關係
譯文內容由第三人軟體翻譯。