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多个地点的名人、运动队、学校和支持者进行极地冲击，以提高人们对名为EB的罕见遗传性皮肤病的认识和资金
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).
纽约，2024 年 5 月 7 日 /PRNewswire/ — 从马萨诸塞州韦尔斯利海岸到澳大利亚阿德莱德的冷水浴池——第七届年度盛会 为艾洛迪跳水 为了提高人们对名为 Epidermolysis Bullosa（简称 EB）的罕见遗传病的认识和资金，在四月份席卷全球 EB 研究伙伴关系 (EBRP)。
Plunge for Elodie Raises $2.5M+ for Life-Saving Rare Disease Research in just 7 years.
Plunge for Elodie在短短7年内为挽救生命的罕见病研究筹集了超过250万美元的资金。
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 的妈妈、EBRP 董事会成员 Emily Kubik 的 10 个儿时好友发起。埃洛迪出生于 2016 年，患有严重的 EB。她是全球50万EB患者中的一员，预期寿命仅为30年。患有 EB 的孩子被称为 “蝴蝶孩子”，因为他们的皮肤像蝴蝶的翅膀一样脆弱。他们面临剧烈的疼痛、开放的外部和内部伤口以及艰苦的日常包扎过程。
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.
仅在2024年，Plunge for Elodie就筹集了超过53万美元的资金，用于资助救生研究。今年的努力使该活动的筹款总额超过了自2018年以来筹集的250万美元。
"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.
“随着FDA批准的首批EB疗法将于2023年问世，Elodie的Plunge在全球的巨大增长，以及Eb研究背后的惊人势头——我的家人充满了希望。我为 Elodie 勇敢地分享她的故事并激励了这么多人而感到非常自豪。我也非常感谢每一个加入我们这场战斗的人。你的捐款、股票、筹款活动和暴跌确实在产生影响，在EB找到治愈方法之前，我们不会停下来。” Elodie的妈妈兼EB研究伙伴关系董事会成员艾米丽·库比克说。
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、倡导者和大使都参加了今年的 #PlungeforElodie 活动，使其成为一项非常特别且成功的竞选活动。一些亮点是...
- 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.
- 仅在2024年，Plunge for Elodie活动就筹集了53万多美元，并自豪地得到了企业赞助商的支持，其中包括有史以来第一个主办赞助商CSI Pharmacy和五位慷慨的冠名赞助商、Abeona Therapeutics、Belkin Family Lookout Farm、Dellbrook JKS、iHeartMedia和索菲亚的Hope to Cure EB公司。
- 随着阿德莱德、墨尔本、多伦多、冲绳和英国的暴跌，Elodie 的 Plunge for Elodie 进入了地下和世界各地。
- EBRP联合创始人吉尔和埃迪·维德与一个名叫帕特森的EBRP小男孩一起举办了一次跳水活动，以支持这项事业，西雅图的数百名当地支持者和朋友加入并跳入了寒冷的阿尔基海滩水域。
- 从抖音明星卢克和萨西·斯科特到美国橄榄球联盟传奇人物和澳大利亚大使乔纳森·布朗，前美国职业棒球大联盟全明星肖恩·凯西以及像雷恩斯和Hooked Like Helen这样的音乐家，许多大使、运动员、音乐家和团队全力支持EB。
- 第三届年度索菲亚希望奖颁发给了埃里卡·塔兰塔尔，以表彰她对事业和EB社区的坚定支持和奉献。该奖项旨在纪念索菲亚·格雷斯·拉姆齐，她是一岁的孩子，在2020年5月不幸输掉了与EB的战斗。
"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.
“多年来我们获得的大量支持创造了动力，使我们达到了今天的水平。我们的社区继续团结在这一事业周围，我感到非常自豪和感激。没有这样的支持，2023年美国食品药品管理局批准的两种治疗方法是不可能的。我们将继续与这个社区合作，直到找到治愈埃博拉病的方法——甚至更多。” EB Research Partnership 联合创始人兼主席吉尔·维德说。
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 的所有收益将直接捐给 EB 研究合作伙伴关系。自2010年以来，EB研究伙伴关系（EBRP）已筹集了超过6000万美元，资助了140多个项目，并有效地改变了EB临床试验格局。从2项临床试验到40多项试验，包括2种FDA批准的治疗方法，在治疗EB方面取得了显著进展。
More information on how to donate and get involved can be found at . You can also follow @plungeforelodie and @ebresearch on Instagram and Facebook.
有关如何捐款和参与的更多信息，请访问 。你也可以在 Instagram 和脸书上关注 @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.
关于 EB 研究伙伴关系
EB Research Partnership（EBRP）由一群敬业的家长与Pearl Jam的Jill和Eddie Vedder于2010年创立，是最大的全球非营利组织，致力于资助旨在治疗并最终治愈大疱性表皮松解症（EB）的研究，这是一组从出生起就影响儿童的毁灭性和危及生命的皮肤病。
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在美国和澳大利亚设有办事处，全天候运用创新的风险慈善商业模式。在为研究项目提供资助时，如果疗法或产品在商业上取得成功，他们会保留创造经常性收入来源的额外上升空间，然后使用投资回报为额外的EB研究提供资金，直到找到治疗方法。
To learn more, visit
要了解更多信息，请访问
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.
关于 Elodie 的 Plunge
Plunge以7岁的埃洛迪·库比克的名字命名，他患有严重的EB，最初是马萨诸塞州的一项当地活动，由埃洛迪妈妈儿时的朋友组织。他们想为家庭做更多的事情，而不仅仅是提供情感支持。因此，Elodie的第一次跳水发生在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年以来，Plunge已为拯救生命的EB研究筹集了超过250万美元，并惠及全球数千人。2024年，Elodie在全球范围内经历了20多次暴跌，包括纽约、马萨诸塞州、北卡罗来纳州、纳什维尔、墨尔本、西雅图、冲绳等！
To learn more, visit
要了解更多信息，请访问
SOURCE EB Research Partnership
来源 EB 研究伙伴关系