The Butterfly Children

 Landmark victory for individuals living with DEB and their families, the FDA announced their approval of Krystal Biotech’s VYJUVEK™ for the treatment of Dystrophic Epidermolysis Bullosa (DEB).

Retrieved on: 
Friday, May 19, 2023
FDA, Pharmaceutical, Business, General Health, Professional Services, Philanthropy, Genetics, Clinical Trials, Fund Raising, Foundation, Biotechnology, Science, Other Philanthropy, Other Science, Research, Health, SAB, Yale University, Skin, DEB, Krystal, Parent, RDEB, The Butterfly Children, Epidermolysis bullosa, Multimedia, MIT, Venture philanthropy, Physician, Harvard Business School, EB, First Ever, Medical device, Pharmaceutical industry

Today, DEB warriors around the world cross into the 5% with the approval of Krystal Biotech’s VYJUVEK™ treatment.

Key Points: 
  • Today, DEB warriors around the world cross into the 5% with the approval of Krystal Biotech’s VYJUVEK™ treatment.
  • This FDA approval marks a milestone in EBRP’s mission to discover treatments and a cure for EB.
  • We are grateful for Krystal Biotech’s commitment to delivering the first ever FDA approved treatment for DEB.
  • Today’s FDA approval of the first-ever medication to treat DEB is an exciting milestone on this journey.

Billie Eilish, Will Ferrell, Tom Holland, John Legend, Chris Pratt, Keanu Reeves, Olivia Rodrigo, Emma Watson, and more, help lead year 3 of Venture Into Cures which in total has raised over $6 million for EB Research Partnership, to find a cure for Epide

Retrieved on: 
Thursday, December 1, 2022
Venus, Marketing, Human, Skin, Jonas Brothers, The Butterfly Children, Door knocker, Organization, How I Braved Anu Aunty and Co-Founded a Million Dollar Company, Epidermolysis bullosa, Multimedia, FINNEAS, Parent, Frog, Pulse, EB, Research, Broken Social Scene, Venture philanthropy, Bigger Love, CSR, FDA, Music, Pharmaceutical industry, Film, Macklemore

The one-hour virtual show was produced by EBRP and Door Knocker Media, with artist booking by one twenty eight.

Key Points: 
  • The one-hour virtual show was produced by EBRP and Door Knocker Media, with artist booking by one twenty eight.
  • "Through the ongoing support of the Venture Into Cures' audience, donors and the patient and medical communities, we will continue to fund the most innovative and impactful global research.
  • Singer/songwriter John Legend,performing an exclusive presentation of his song, "Never Break", in honor of the brave young people and families living with EB.
  • Actor Chris Pratt introduces seven year old EB warrior Solomon Bonner, and shares his story through a mutual love of dinosaurs.

Macklemore, Lamorne Morris, Keanu Reeves, and Emma Watson join Jill and Eddie Vedder, and more, for a virtual benefit show support for EB Research Partnership's mission to find a cure for Epidermolysis Bullosa

Retrieved on: 
Thursday, November 17, 2022
EB, The Butterfly Children, Epidermolysis bullosa, Friends, Family, Research, Skin, FDA, Venture philanthropy, Pharmaceutical industry, Macklemore

The show will feature moving stories about individuals and families living with Epidermolysis Bullosa (EB), alongside celebrity appearances and performances, to educate viewers about EB and raise critical funds to support a cure for EB and other rare diseases.

Key Points: 
  • The show will feature moving stories about individuals and families living with Epidermolysis Bullosa (EB), alongside celebrity appearances and performances, to educate viewers about EB and raise critical funds to support a cure for EB and other rare diseases.
  • "This year, we're continuing to rally our friends and family around the cause, with my daughters Olivia and Harper joining the show."
  • Over the last ten years, EBRP in particular has made incredible strides in research and clinical trials.
  • Please join us in achieving that goal and changing lives across the globe," added Eddie Vedder, musician and EBRP co-founder.

Announcing the 5th Annual Virtual Plunge for Elodie March 26 - 27, 2022

Retrieved on: 
Thursday, March 10, 2022
Time, Clinical trial, Research, Life expectancy, SBSK, Parent, EB, The Butterfly Children, Genetic disorder, Epidermolysis bullosa, Hope, Skin, Social media, Disease, Memory, Freezing, USS Plunger (SSN-595), Pharmaceutical industry

NEW YORK, March 10, 2022 /PRNewswire/ -- EB Research Partnership (EBRP) announces the 5th annual Plunge For Elodie scheduled for March 26 - March 27, 2022.

Key Points: 
  • NEW YORK, March 10, 2022 /PRNewswire/ -- EB Research Partnership (EBRP) announces the 5th annual Plunge For Elodie scheduled for March 26 - March 27, 2022.
  • 2022 marks a groundbreaking year as the Plunge for Elodie is set to surpass $1 million raised for the EBRP.
  • What began as a small hometown fundraiser now includes 4 national Plunge locations: a main Plunge in Massachusetts plus satellite Plunges in North Carolina, New York, and Connecticut, and a far-reaching Virtual Plunge campaign on social media.
  • The cause has drawn thousands of Plungers around the globe and has even captured the eyes of Hollywood, with actress Jessica Biel taking a Virtual Plunge in 2018.

Tom Holland, Eddie Vedder, Selena Gomez, Zendaya and more help raise over $2.4 million for EB Research Partnership, to find a cure for Epidermolysis Bullosa

Retrieved on: 
Thursday, December 9, 2021
AWS, Silver, Research, Epidermolysis bullosa, Light, YouTube, Jonas Brothers, Parent, The Butterfly Children, Venture philanthropy, Skin, How I Braved Anu Aunty and Co-Founded a Million Dollar Company, Patient, EB, The Muppets, CEO, Amazon Web Services, FDA, Fullmer, Brandlive, Internet service provider, Interior design, Pharmaceutical industry

The one hour virtual show was produced by EBRP and Door Knocker Media, with artist booking by one twenty eight.

Key Points: 
  • The one hour virtual show was produced by EBRP and Door Knocker Media, with artist booking by one twenty eight.
  • Venture Into Cures streamed globally through official streaming partner Brandlive and is available for replay on EBRP's YouTube channel.
  • We owe it to them to continue the race toward finding a cure for EB and other rare diseases."
  • The Holland family's foundation, The Brothers Trust , has dedicated time, resources, and funding to help children and families battling EB.

Zendaya and Sofia Carson join Tom Holland and more for Venture Into Cures, a virtual event supporting EB Research Partnership's mission to find a cure for Epidermolysis Bullosa

Retrieved on: 
Wednesday, November 17, 2021
Skin, Venture philanthropy, Jonas Brothers, Awareness, The Butterfly Children, Parent, Epidermolysis bullosa, Research, Amazon Web Services, EB, FDA, AWS, Brandlive, How I Braved Anu Aunty and Co-Founded a Million Dollar Company, Animal, Entertainment, Pharmaceutical industry

"I have never seen resilience and bravery like I've seen in the stories of those living with EB," said Tom Holland, actor and host of Venture Into Cures.

Key Points: 
  • "I have never seen resilience and bravery like I've seen in the stories of those living with EB," said Tom Holland, actor and host of Venture Into Cures.
  • "I play a superhero in movies, but these kids and families are the true superheroes - they face impossible hardships every day, yet they keep pushing forward.
  • We owe it to them to continue the race toward finding a cure for EB and other rare diseases."
  • The Holland family's foundation, The Brothers Trust , has dedicated time, resources, and funding to help children and families battling EB.

ELONGATE Announces Title Sponsorship of EB Research Partnership's #VentureIntoCures Event

Retrieved on: 
Friday, November 5, 2021
Balancing, View, EB, CEO, The Butterfly Children, Brother, Multimedia, Research, The Balancing Act, Partnership, Epidermolysis bullosa, Lifetime (TV network), Awareness, US, Gene editing, Skin, Patient, Founding, Cryptocurrency, Pharmaceutical industry

ZUG, Switzerland, Nov. 5, 2021 /PRNewswire/ -- The world's biggest social impact focused crypto, Elongate, announces its title sponsorship of EB Research Partnership's #VentureIntoCures event on November 18.

Key Points: 
  • ZUG, Switzerland, Nov. 5, 2021 /PRNewswire/ -- The world's biggest social impact focused crypto, Elongate, announces its title sponsorship of EB Research Partnership's #VentureIntoCures event on November 18.
  • In line with this year's Epidermolysis Bullosa Awareness Week, Elongate and EB Research Partnership came together on The Balancing Act which aired October 26 on Lifetime TV to talk about the rare disorder and how it affects patients.
  • In May 2021, EB Research Partnership announced a US$150,000 seed donation from Elongate to launch the #CryptoForCures Fund , establishing Elongate as the Founding Member.
  • Details about this year's Venture Into Cures event can be found here: https://www.ventureintocures.org/
    View original content to download multimedia: https://www.prnewswire.com/news-releases/elongate-announces-title-sponso...

ELONGATE Announces Title Sponsorship of EB Research Partnership's #VentureIntoCures Event

Retrieved on: 
Friday, November 5, 2021
Balancing, EB, CEO, The Butterfly Children, Brother, Research, The Balancing Act, Partnership, Epidermolysis bullosa, Lifetime (TV network), Awareness, US, Gene editing, Skin, Patient, Founding, Cryptocurrency, Pharmaceutical industry

ZUG, Switzerland, Nov. 5, 2021 /PRNewswire/ -- The world's biggest social impact focused crypto, Elongate, announces its title sponsorship of EB Research Partnership's #VentureIntoCures event on November 18.

Key Points: 
  • ZUG, Switzerland, Nov. 5, 2021 /PRNewswire/ -- The world's biggest social impact focused crypto, Elongate, announces its title sponsorship of EB Research Partnership's #VentureIntoCures event on November 18.
  • Announced officially on October 30, the second annual digital stream event will be hosted by actor and The Brother's Trust member, Tom Holland.
  • In line with this year's Epidermolysis Bullosa Awareness Week, Elongate and EB Research Partnership came together on The Balancing Act which aired October 26 on Lifetime TV to talk about the rare disorder and how it affects patients.
  • In May 2021, EB Research Partnership announced a US$150,000 seed donation from Elongate to launch the #CryptoForCures Fund , establishing Elongate as the Founding Member.

Tom Holland will serve as host for Venture Into Cures, a virtual event supporting EB Research Partnership's mission to find a cure for Epidermolysis Bullosa, featuring EBRP Co-Founders Jill and Eddie Vedder along with Brandi Carlile, Selena Gomez, The Jon

Retrieved on: 
Thursday, November 4, 2021
EB, Research, Jonas Brothers, Epidermolysis bullosa, How I Braved Anu Aunty and Co-Founded a Million Dollar Company, FDA, The Muppets, The Butterfly Children, Time, CEO, Awareness, Skin, Brandlive, Amazon Web Services, AWS, Parent, Venture philanthropy, Pharmaceutical industry

The Holland family's foundation, The Brothers Trust , has dedicated time, resources, and funding to help children and families battling EB.

Key Points: 
  • The Holland family's foundation, The Brothers Trust , has dedicated time, resources, and funding to help children and families battling EB.
  • "I have never seen resilience and bravery like I've seen in the stories of those living with EB," said Tom Holland, actor and host of Venture Into Cures.
  • We owe it to them to continue the race toward finding a cure for EB and other rare diseases."
  • Last year's inaugural Venture Into Cures virtual event attracted over 500,000 viewers and raised more than $2 million to fund EB research.