EB Research Partnership
EB Research Partnership
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Join Our Venture Into Cures | EB Research Partnership
EB Research Partnership (EBRP) is the largest global organization dedicated to curing Epidermolysis Bullosa (EB), a devastating genetic skin disorder. Through innovative research and a venture philanthropy model, EBRP is accelerating treatments and cures not only for EB but also for thousands of other rare diseases. Ambassadors like Will Ferrell, Billie Eilish, Olivia Rodrigo, Selena Gomez, Tom Holland, and Chris Hemsworth are helping drive this mission forward with their passion and determination, bringing us closer every day to a world free of EB and rare diseases.
Переглядів: 102

Відео

Chiesi Total Care Community Council | EB Research Partnership
Переглядів 772 місяці тому
In our recent community council with the Chiesi Total Care Team, we delved into the comprehensive support services offered to patients. The Chiesi Total Care Team serves as a one-stop resource designed to make the therapeutic journey smoother for individuals dealing with rare diseases. The dedicated team made up of pharmacists, case managers, virtual wound care nurses, insurance support, and mo...
EB Research Partnership CEO Keynotes Chan Zuckerberg Initiative’s 2023 Science In Society Meeting
Переглядів 66910 місяців тому
EB Research Partnership's CEO, Michael Hund, was a keynote speaker at the Chan Zuckerberg Initiative's 2023 Science in Society Annual Meeting: Advancing Patient-Driven Research In Rare Disease. In this keynote to open the Patients Driving Breakthroughs and Progress in Rare Disease Research, Treatments, and Cures session, Michael highlights the organization's work to advance research in Epidermo...
EBRP Community Council | Plunge for Elodie 2024
Переглядів 18611 місяців тому
In this Community Council you'll learn how you can support the 2024 Plunge for Elodie and even start your own! Our speakers have hosted Plunges all across the country in oceans, aquatic centers, kiddie pools, ice baths, & more. In this Community Council you'll hear directly from our organizers on what it takes to plan a Plunge. This is an event to raise awareness and funds for critical research...
The Story of EB Research Partnership
Переглядів 2,6 тис.11 місяців тому
Founded in 2010 by Jill Vedder, Eddie Vedder of Pearl Jam, and a group of dedicated parents, EB Research Partnership (EBRP) is the largest global nonprofit funding research aimed at treating and ultimately curing Epidermolysis Bullosa (EB). EB is a group of devastating and life-threatening genetic skin disorders that affect children from birth. Thanks to the long-standing support of brave EB wa...
Patients Driving Breakthroughs & Progress in Rare Disease Research, Treatments, and Cures | EBRP
Переглядів 321Рік тому
EB Research Partnership's Co-Founder, Eddie Vedder, Global Ambassador, Tom Holland, and CEO, Michael Hund, tell the story of those battling Epidermolysis Bullosa (EB) and how we can accelerate the path to cures by combining the power of the patient and cutting-edge technology.
University of South Australia Working Towards a Cure for EB | Venture into Cures 2022
Переглядів 378Рік тому
Jonathan Brown, EB Research Partnership Australia, helps highlight the incredible EB research being done at University of South Australia to discover new technologies and therapeutics that will help those battling Epidermolysis Bullosa. Learn more about the work and impact of EB Research Partnership at ebresearch.org Help us reach that goal by making a donation to life-saving research at give.e...
Finding a Cure for EB & Pioneering The Model for Rare Disease | EBRP Yield Giving Open Call
Переглядів 582Рік тому
EB Research Partnership is a game-changing medical research organization with one bold goal: accelerate treatments and a cure for Epidermolysis Bullosa (EB) by 2030 and in the process, pioneer a new business model for how disease can be cured. Thank you to Yield Giving and MacKenzie Scott for your consideration. Together, we can make EB history. Founded by a group of dedicated parents set out t...
CEO of EB Research Partnership Michael Hund on Venture Philanthropy | Venture into Cures
Переглядів 70 тис.Рік тому
We thrive on opportunities to achieve the seemingly impossible. For those living with Epidermolysis Bullosa, or EB, living a pain free life, being able to eat, sleep, and even walk without suffering, is their elusive dream. But it's not impossible. EB is an often fatal genetic skin disorder that affects children from birth. But curing EB is not an if - only a when. And at EB Research Partnershi...
Chris Pratt & Solomon want Epidermolysis Bullosa to Be Extinct | Venture into Cures 2022
Переглядів 2,5 тис.Рік тому
For 7-year-old Solomon Bonner, the roar of the dinosaur inspires him to be brave in his daily battle with EB. It's time we make EB extinct. A cure for Epidermolysis Bullosa is within reach. And in finding a cure for EB we can pave the way to curing thousands of other rare diseases as well. Learn more about the work and impact of EB Research Partnership at ebresearch.org Help us reach that goal ...
Olivia Rodrigo on the Beauty of the EB Community & Science Funded by EBRP | Venture into Cures 2022
Переглядів 178 тис.Рік тому
People with EB have skin so delicate, they call it the butterfly disease. But like the butterfly, what begins as an impossible struggle can become a remarkable metamorphosis. There's beauty in the growth of science and magic in the transformation of research. Olivia Rodrigo helps explain how beautiful the EB community is and why a cure for EB is just within reach. Learn more about the work and ...
Joy Oladokun Honors the EB Community with Eddie Vedder's Matter of Time | Venture into Cures 2022
Переглядів 2,5 тис.Рік тому
The remarkable, powerful Joy Olodakun covers Eddie Vedder's Matter of Time to honor the EB Community for the 2022 Venture into Cures digital show aimed at raising funds for critical, life-saving research and awareness for Epidermolysis Bullosa (EB). Learn more about the work and impact of EB Research Partnership at ebresearch.org Help us reach that goal by making a donation to life-saving resea...
Hannah Simone Tells the Story of the Endlessly Brave & Positive Fazeel | Venture into Cures 2022
Переглядів 5 тис.Рік тому
Hannah Simone helps tell the story of Fazeel Irfan - a young man living with Recessive Dystrophic Epidermolysis Bullosa, or RDEB for short. Fazeel is funny, smart, determined, and beats the odds every chance he gets. Learn more about the work and impact of EB Research Partnership at ebresearch.org Help us reach that goal by making a donation to life-saving research at give.ebresearch.org/donate...
Emma Watson, Kermit the Frog & Elodie on How The Plunge for Elodie Began | Venture into Cures 2022
Переглядів 3,3 тис.Рік тому
6-year-old Elodie Kubik was born with Recessive Dystrophic Epidermolysis Bullosa (RDEB). Like all children with EB, Elodie is missing a critical protein that binds the layers of the skin together, making it extremely fragile and causing severe pain and wounds, both internal and external. Emma Watson and Kermit the Frog joined Elodie for the 3rd annual Venture into Cures event to help raise awar...
Keanu Reeves Discusses Healing Power of Art Alongside Artist Deanna | Venture into Cures 2022
Переглядів 1,8 тис.Рік тому
"Whether it's the finger painting of a child or a gallery masterpiece, the power of art to heal and to inspires undeniable," says Keanu Reeves as he introduces artist Deanna Molinaro at the 2022 Venture into Cures digital show. Deanna is an artist who is living with Dystrophic Epidermolysis Bullosa, or RDEB, and she shares her story. Learn more about the work and impact of EB Research Partnersh...
Jennifer Garner Joins the EB Community to Dream of a World Beyond EB | Venture into Cures 2022
Переглядів 4,3 тис.Рік тому
Jennifer Garner Joins the EB Community to Dream of a World Beyond EB | Venture into Cures 2022
How Critical, Genetic Research Could Change Lives Everywhere | Venture into Cures 2022
Переглядів 590Рік тому
How Critical, Genetic Research Could Change Lives Everywhere | Venture into Cures 2022
Ed Sheeran Performs Overpass Graffiti from = Album | Venture Into Cures 2021
Переглядів 3842 роки тому
Ed Sheeran Performs Overpass Graffiti from = Album | Venture Into Cures 2021
Lamorne Morris Knows #EBIsNoJoke | Venture Into Cures 2021
Переглядів 1002 роки тому
Lamorne Morris Knows #EBIsNoJoke | Venture Into Cures 2021
The Jonas Brothers Join the #EBIsNoJoke Movement | Venture Into Cures 2021
Переглядів 2482 роки тому
The Jonas Brothers Join the #EBIsNoJoke Movement | Venture Into Cures 2021
A Mother's Story of Her Son's Battle with EB | Venture Into Cures 2021
Переглядів 4022 роки тому
A Mother's Story of Her Son's Battle with EB | Venture Into Cures 2021
Zendaya Tells The Story of True Superhero Novelette | Venture Into Cures 2021
Переглядів 6632 роки тому
Zendaya Tells The Story of True Superhero Novelette | Venture Into Cures 2021
Jonathan's Humor Helps Ease the Pain of EB | Venture Into Cures 2021
Переглядів 4782 роки тому
Jonathan's Humor Helps Ease the Pain of EB | Venture Into Cures 2021
The EB Community's Dream of a World with a Treatment or Cure for EB | Venture Into Cures 2021
Переглядів 4592 роки тому
The EB Community's Dream of a World with a Treatment or Cure for EB | Venture Into Cures 2021
Kristen Bell and Jack Black Know #EBIsNoJoke | Venture Into Cures 2021
Переглядів 1872 роки тому
Kristen Bell and Jack Black Know #EBIsNoJoke | Venture Into Cures 2021
Tom Holland and The Brothers Trust's Hope to Heal EB | Venture Into Cures 2021
Переглядів 1,6 тис.2 роки тому
Tom Holland and The Brothers Trust's Hope to Heal EB | Venture Into Cures 2021
Tom Holland and Gonzo Celebrate Being Different with EB Superhero Clara | Venture Into Cures 2021
Переглядів 3,1 тис.2 роки тому
Tom Holland and Gonzo Celebrate Being Different with EB Superhero Clara | Venture Into Cures 2021
The Deshe Family's Drive to Accelerate Cures for EB | Venture Into Cures 2021
Переглядів 8282 роки тому
The Deshe Family's Drive to Accelerate Cures for EB | Venture Into Cures 2021
1 Big Thing: Scott Van Pelt and EB Ninja Charley Knock out EB | Venture Into Cures 2021
Переглядів 4882 роки тому
1 Big Thing: Scott Van Pelt and EB Ninja Charley Knock out EB | Venture Into Cures 2021
Tom Holland and Lily Hevesh Explain the Domino Effect to Heal EB | Venture Into Cures 2021
Переглядів 3432 роки тому
Tom Holland and Lily Hevesh Explain the Domino Effect to Heal EB | Venture Into Cures 2021

КОМЕНТАРІ

  • @ChuckleFuks
    @ChuckleFuks 2 дні тому

    Extremely off topic but her father looks like an older Josh Hutcherson

  • @targetwithrahul7501
    @targetwithrahul7501 15 днів тому

    My baby suffering from EB from India

  • @eleafarromero422
    @eleafarromero422 19 днів тому

    Thanks so much for making the world known of our hardships

  • @BlizzPort
    @BlizzPort 21 день тому

    No child should suffer this. There needs to be more awareness about this.

  • @marcushokkanen9211
    @marcushokkanen9211 Місяць тому

    God bless him🙏✝️

  • @XxdustinxX
    @XxdustinxX Місяць тому

    Who else came from the sbsk video?

  • @AleeshaQureshi-v5t
    @AleeshaQureshi-v5t Місяць тому

    My daughter suffering from eb😢

  • @renmazzolo9676
    @renmazzolo9676 2 місяці тому

    Hi Michael, Great to meet you here in Sydney Australia, twice in the one week! 👌👌 Congratulations on the work you do for a fabulous cause. We’re all so impressed with your enthusiasm and energy mate. Stay safe and we’re all so looking forward to hopefully catching up again soon 🤞🤞Best wishes Ren & Carol ❤️❤️

  • @kansascityonline
    @kansascityonline 2 місяці тому

    Thanks for this update. So proud of all you good folks.. Lets banish this horrendous disease forever! Keep fighting the good fight!.. You all are making the difference.. We send our love, admiration and support..!!..

  • @luismanchado9830
    @luismanchado9830 2 місяці тому

    Que Dios bendiga a este hermoso niño, a sus papás y a su hermanito

  • @storytimewithkingnyatimash1231
    @storytimewithkingnyatimash1231 3 місяці тому

    You are such good parents ,keep the good work

  • @manishakhoyani6258
    @manishakhoyani6258 3 місяці тому

    Get well soon 🙏 Baby❤❤... please go to Jesus Christ he can heal this Babu Jesus Christ is living God .... Jesus heal me...god bless you 🙏 love from India 🇮🇳❤❤

  • @carolynjones6524
    @carolynjones6524 3 місяці тому

    Stay strong Brady

  • @MangoDonations
    @MangoDonations 3 місяці тому

    This is a great charity that helps with rare disorders.

  • @kithalie
    @kithalie 4 місяці тому

    The mom looks like pokimane

  • @driskey82
    @driskey82 4 місяці тому

    That nurse has some nerve accusing these parents of handling Rowan too roughly WTF!

  • @AS-qg1xu
    @AS-qg1xu 4 місяці тому

    I want nothing more than for there to be a cure for this devastating condition. I feel so badly for the sufferers of this cruel condition. Thank you Eddie Vedder.

  • @Grandma_is_gamin
    @Grandma_is_gamin 5 місяців тому

    This was 5 years ago. I hope they still read this and the parents probably know this but there is a cream I just read about that contains collagen 7 which is helping heal the wounds.

  • @AS-qg1xu
    @AS-qg1xu 5 місяців тому

    Dear precious boy, Brady. I pray for him and John Hudson Dilgen who also suffers from this horrible condition. I donated to the EB Research Partnership yesterday.

  • @FlipperWolf
    @FlipperWolf 5 місяців тому

    I really hope they can achieve their goal, it's not fair that people have to go through this...

  • @valerielang596
    @valerielang596 5 місяців тому

    God Bless him & thank u to the Vedders

  • @valariesrisingsun7937
    @valariesrisingsun7937 5 місяців тому

    He's the cutest little boy ever! 🥹😍😘

  • @dagmarlibosvarova9421
    @dagmarlibosvarova9421 5 місяців тому

    Chudák dítě 🖤🖤🖤🖤🖤🖤🖤

  • @DeborahBooth-zv4bp
    @DeborahBooth-zv4bp 5 місяців тому

    Hoping she's ok just clicked on to the channel she's beautiful god bless ❤

  • @faye.mcmorris
    @faye.mcmorris 5 місяців тому

    Hopefully she can start Vyjuvek

  • @sallywingles9057
    @sallywingles9057 5 місяців тому

    Letting over 12M cross our borders and paying to house, feed, clothe, medical, cars, phones, and also sending billions for other countries wars, but we can't make it easy to pay for this or any child's care and supplies. Makes me sick knowing our insurance companies would make it so hard for a family to get the help they need financially. We work hard enough, pay our taxes, and our medical insurance premiums. We can and should do much better!!!

  • @sangi7114
    @sangi7114 5 місяців тому

    This video is 9 years!I love Pearl Jam. However, the 5 million dollar mark has yet to be met?! They don't need 5 million to "find" a cure. The money is needed for bribing the medical profession, to hand over information, regarding a cure. Not a conspiracy theorist. However, as a Special Ed. Teacher, who has worked with human beings ages 18 month-olds, to 42 year-olds; mainly on the spectrum, im so sick of hearing: we are getting close to finding a cure! If you just donate....... "Evidence of Harm" great book. Oh, until the author was "forced" to profess, his findings were a scam. I suppose when your family's lives are being threatened, you do not have much choice.

  • @ethanfranklin9726
    @ethanfranklin9726 6 місяців тому

    😢❤❤❤

  • @HarshHamde-oc7on
    @HarshHamde-oc7on 6 місяців тому

    It took me more than 25 Years to discover this thing. I am a very severe patient of pneumonia and inflammation. I have a very sensitive body and if I eat anything inflammatory, my body becomes sensitive and I face either inflammation or pneumonia at a time. I checked it out by eating particular fruit, vegetable or grain for a particular time period . So it took me more than 25 Years to sort out these foods. During covid 19 infection, in some cases a patient's immune system becomes too sensitive and it produces excessive mucus. And if it is not controlled on time ,it takes a form of septic and the patient dies. What i am going to tell you, it is a natural way to control the over inflammation. Please read it thoroughly. Non inflammatory diet plan. 1. All the products that are made from/of wheat and barley but not bread, biscuits or cookies because they contain vegetables oils. 2. All the products that are made from pure animal milk like curd, cheese, ghee, butter clarified etc. 3. Paprika powder,red chilli powder, coriander powder,turmeric, sea salt,tea, white sugar. Mustard oil. 4. All, non - vegetable foods like mutton, chicken, fish, eggs, pork, beef etc. 5. Apricot, lemon (not limes). 6. Masoor daal, cinnamon. (mostly these grains and fruits are grown only in cold areas. ) I tell you, I used to face pneumonia or inflammation severely after every two or three months time period. A small scratch or cut on body used to take a form of a wound that did take months to get treated. I faced septic six times so far. when I got fed up by taking the antibiotics and they stopped working. I have no option but that. There are many things that are inflammatory and make a human body inflamed. if you have a sensitive body and you eat these things. Your body acts overwhelmingly, it produces more mucus or more white platelets to counter the problem. Sometimes the immune system becomes autoimmune and it acts overwhelmingly without a reason. Generally a human body does take 12 to 15 days to produce antibodies against any virus. In covid 19 infection, in some cases the human body acts overwhelmingly and produces more mucus. And before having the immunity the patient faces saptic and this is the reason the affected person dies. tell me the reason, why on a ventilator, a patient condition gets better after 6 or 8 days. It is just because he does not eat anything but he takes glucose for surviving and as I told you glucose is a non - inflammatory food. Second thing, during covid 19 infection many animals like dogs, cats and lions got affected with this virus but none of them was dead, I tell you why, covid 19 is not fatal for animals, it is just because of their feeds. Why won't the animals face gangrene, mums and excessive inflammation problems. It is not a natural deed. I tell you if you strictly eat only none-vegetarians grilled or boiled foods for 15 to 18 days without any sort of spices except lemon (not lime because lime is very inflammatory thing ). As we know that vitamin 'c' is a must to boost out immunity and none of the meaty foods provides vitamin c there. You can take sea salt, it is none inflammatory too. If you follow this diet plan very very strictly, you start to observe the results after four or five days and you can achieve zero inflammation withing 15 to 18 days. So please have a trust on it, and apply this diet plan strictly for 15 to 18 days and see the results by yourself. If you follow this thing during covid 19 infection you never face the worst and you never need a vantilater support to breathe. Note - you have to follow this diet plan very very strictly for 15 to 18 days. A little thing except the described diet plan can affect the whole result so apply this diet plan very very strictly. By Following this diet plan strictly you can treat mums, gangrene,herpes, pneumonia inflammation and any sort of fatal wound that hasn't been getting cured for a long time. Dear readers, I was a very severe patient of pneumonia and I had been facing it since my childhood. But now it's been three years. I won't face it and I have been living a strict but healthy life without any medication. I tell you the doctors will never recommend you this thing because they do not know it. And with this thing you can cure many incurable diseases without spending a single penny. This thing has no side effect. I mailed this thing to many doctors and one of them took this thing seriously. She practiced this thing on her patients. She offered only grilled or boiled none-vegetarians foods to covid 19 affected petients and she was very surprised to see the results. She admitted that corona virus could not have survived for more than four days and sooner they got rid of this dreadful virus veryeasily. She uploaded a video on youtube on this success, but youtube had removed that video two or three hours later. I don't know why this thing is being suppressed. But I know one thing, it is the only cure for this dreadful problem. In coming future if this thing is proved right, you will be responsible for all the lost of innocent lives that could have been saved. If you have any query please let me know at: harshhamde@gmail.com. Thank you. If you have any questions or querie, please call me at 9867067377, Please share this thing with the person who needs it most. Thanks..................

  • @willie1220
    @willie1220 6 місяців тому

    Awesome Stuff. Im 32 years old with EBS. This had me in tears, reminded me of my youth and the struggles i had.

  • @lindalvaandradedasilvaandr5045
    @lindalvaandradedasilvaandr5045 7 місяців тому

    Só gratidão a Deus e as pessoas que tem um coração enorme no peito,como vc e seu marido . Gratidão sempre.

  • @oliverrando6463
    @oliverrando6463 7 місяців тому

    That disease has to be the worst disease ever epidermis bullosa whatever the name is and to happen to children

  • @emmawheeler8559
    @emmawheeler8559 7 місяців тому

  • @rosecroix2467
    @rosecroix2467 8 місяців тому

    Anthroposophic Medicine

  • @kaijuzilla2357
    @kaijuzilla2357 9 місяців тому

    12:38 Emma's this look makes me want to call her as marshmallow lol She looks so cute

  • @debbiebrannon8874
    @debbiebrannon8874 9 місяців тому

    Praying for a healing for her amen try cannabis oil and THC and worm medicine for animals to kill cancer amen

  • @ixchel777
    @ixchel777 9 місяців тому

    God bless this initiative and Mark s family😊

  • @rosemaryallencarlson9911
    @rosemaryallencarlson9911 10 місяців тому

    She liked my comment on Twitter I talked with her at first I thought it was not having anything to do with him so I emailed it to his employee quess they thought I was crazy then I had a really bad rash at that time no feeling good it was so painful I told my son gf I wish they had a support group just to talk to others who had it I could not fight it every month .

  • @김혜민-o8z
    @김혜민-o8z 10 місяців тому

    4:56/5:14

  • @김혜민-o8z
    @김혜민-o8z 10 місяців тому

    1/10

  • @muhammadahad4036
    @muhammadahad4036 10 місяців тому

    My year is 17 and one my brother EB patient my brother 10year

  • @muhammadahad4036
    @muhammadahad4036 10 місяців тому

    I am EB patient from pakistan

  • @JoshuaBortnick
    @JoshuaBortnick 10 місяців тому

    I'm so upset with you people, Thinking you are a false charity. Because you should not be seeking treatment or cures when treatment and cures are available. The Raw(unprocessed/unpackaged) bark from the Tepescohuite tree almost immediately cures even the worst medical skin conditions. Combine Tepescohuite with Neosporin and use as poultice. For the Children. Spread the information.

  • @annekabrimhall1059
    @annekabrimhall1059 10 місяців тому

    This is such a great way to inform and inspire! Idk why there aren’t millions of views?

  • @kurtottosen4776
    @kurtottosen4776 11 місяців тому

    how is he doing?

  • @KristinaKerstenDay
    @KristinaKerstenDay Рік тому

    This certainly touched my heart! What a precious child. ❤️ He is wise beyond his years. I am so glad they're bringing awareness to this. I pray that they may find a cure soon!

  • @brandonc5965
    @brandonc5965 Рік тому

    Whar chemicals or drugs are doctors giving people thats causing this honestly

  • @baronghede2365
    @baronghede2365 Рік тому

    To anyone who finds my comment that suffers from EB: please try Aloe Vera and marigold Herb, Blessed Be.

  • @tristonrobinson2243
    @tristonrobinson2243 Рік тому

    My Favorite PSA with a singer who slayed everything.

  • @terencebeghyn6535
    @terencebeghyn6535 Рік тому

    Very promising model that should applicate to other numerous rare conditions...