- Видео 82
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EB Research Partnership
США
Добавлен 30 сен 2014
Founded in 2010 by a group of dedicated parents and Jill and Eddie Vedder of Pearl Jam, EB Research Partnership is the largest 501c3 nonprofit funding research to find a cure for Epidermolysis Bullosa (EB). EB is a group of devastating and life-threatening genetic skin disorders that affect children from birth.
EBRP Town Hall | Plunge for Elodie 2025
During EBRP's October Town Hall you'll learn how you can help us make waves in our mission to cure EB by the end of this decade!
You'll hear from Plunge for Elodie leaders around the country who are doing just that, including Emily Kubik, Elodie's mom and EBRP Board Member, Kristan Khtikian, Plunge for Elodie Co-Chair & Co-Creator, and Annie and Patterson McKenzie, EB warriors and advocates.
We discuss how the Plunge has grown into an international movement, helps EB families rally their communities, has directly led to progress in the field of EB, and how anyone and everyone can get involved.
Please email plunge@ebresearch.org with any questions at all or if you would like to start your ow...
You'll hear from Plunge for Elodie leaders around the country who are doing just that, including Emily Kubik, Elodie's mom and EBRP Board Member, Kristan Khtikian, Plunge for Elodie Co-Chair & Co-Creator, and Annie and Patterson McKenzie, EB warriors and advocates.
We discuss how the Plunge has grown into an international movement, helps EB families rally their communities, has directly led to progress in the field of EB, and how anyone and everyone can get involved.
Please email plunge@ebresearch.org with any questions at all or if you would like to start your ow...
Просмотров: 44
Видео
Eddie Vedder | Wings of Change | EB Awareness Week
Просмотров 6221 день назад
EB Research Partnership Co-Founder, Eddie Vedder, shares how inspired he is by the EB community and discusses the momentum being made on our journey to find a cure for EB - and beyond. Kicking off during EB Awareness Week 2025, the Vedders and EB supporters from around the world are joining #WingsofChange to raise funds for life-saving research and celebrating the strength of the EB community. ...
Wings of Change | EB Awareness Week
Просмотров 21721 день назад
EB Research Partnership co-founders Eddie Vedder & Jill Vedder share how inspired they are by the EB community. There is remarkable momentum being made on our journey to find a cure for EB - and beyond. Kicking off during EB Awareness Week 2025, the Vedders and EB supporters from around the world are joining #WingsofChange to raise funds for life-saving research and celebrating the strength of ...
Join Our Venture Into Cures | EB Research Partnership
Просмотров 116Месяц назад
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...
Chiesi Total Care Community Council | EB Research Partnership
Просмотров 883 месяца назад
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
Просмотров 68911 месяцев назад
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
Просмотров 190Год назад
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
Просмотров 2,8 тыс.Год назад
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
Просмотров 325Год назад
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
Просмотров 382Год назад
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
Просмотров 588Год назад
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
Просмотров 70 тыс.Год назад
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
Просмотров 2,5 тыс.Год назад
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
Просмотров 178 тыс.Год назад
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
Просмотров 2,5 тыс.Год назад
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
Просмотров 5 тыс.Год назад
Hannah Simone Tells the Story of the Endlessly Brave & Positive Fazeel | Venture into Cures 2022
Emma Watson, Kermit the Frog & Elodie on How The Plunge for Elodie Began | Venture into Cures 2022
Просмотров 3,3 тыс.Год назад
Emma Watson, Kermit the Frog & Elodie on How The Plunge for Elodie Began | Venture into Cures 2022
Keanu Reeves Discusses Healing Power of Art Alongside Artist Deanna | Venture into Cures 2022
Просмотров 1,8 тыс.Год назад
Keanu Reeves Discusses Healing Power of Art Alongside Artist Deanna | Venture into Cures 2022
Jennifer Garner Joins the EB Community to Dream of a World Beyond EB | Venture into Cures 2022
Просмотров 4,3 тыс.Год назад
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
Просмотров 602Год назад
How Critical, Genetic Research Could Change Lives Everywhere | Venture into Cures 2022
Ed Sheeran Performs Overpass Graffiti from = Album | Venture Into Cures 2021
Просмотров 3842 года назад
Ed Sheeran Performs Overpass Graffiti from = Album | Venture Into Cures 2021
Lamorne Morris Knows #EBIsNoJoke | Venture Into Cures 2021
Просмотров 1042 года назад
Lamorne Morris Knows #EBIsNoJoke | Venture Into Cures 2021
The Jonas Brothers Join the #EBIsNoJoke Movement | Venture Into Cures 2021
Просмотров 2492 года назад
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
Просмотров 4102 года назад
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
Просмотров 6672 года назад
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
Просмотров 4972 года назад
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
Просмотров 4642 года назад
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
Просмотров 1922 года назад
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
Просмотров 1,6 тыс.2 года назад
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
Просмотров 3,2 тыс.2 года назад
Tom Holland and Gonzo Celebrate Being Different with EB Superhero Clara | Venture Into Cures 2021
Yay! Can't wait for Los Angeles, 2025 🦋
#Comesayhi
Você também é Jill Vedder!! GRANDE ❤!!
Elle est mignonne
Cure EB
My baby suffering from EB from India
Thanks so much for making the world known of our hardships
No child should suffer this. There needs to be more awareness about this.
God bless him🙏✝️
Who else came from the sbsk video?
My daughter suffering from eb😢
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 ❤️❤️
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..!!..
Que Dios bendiga a este hermoso niño, a sus papás y a su hermanito
You are such good parents ,keep the good work
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 🇮🇳❤❤
Stay strong Brady
This is a great charity that helps with rare disorders.
The mom looks like pokimane
That nurse has some nerve accusing these parents of handling Rowan too roughly WTF!
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.
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.
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.
I really hope they can achieve their goal, it's not fair that people have to go through this...
God Bless him & thank u to the Vedders
He's the cutest little boy ever! 🥹😍😘
Chudák dítě 🖤🖤🖤🖤🖤🖤🖤
Hoping she's ok just clicked on to the channel she's beautiful god bless ❤
Hopefully she can start Vyjuvek
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!!!
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.
😢❤❤❤
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..................
Awesome Stuff. Im 32 years old with EBS. This had me in tears, reminded me of my youth and the struggles i had.
Só gratidão a Deus e as pessoas que tem um coração enorme no peito,como vc e seu marido . Gratidão sempre.
That disease has to be the worst disease ever epidermis bullosa whatever the name is and to happen to children
❤
Anthroposophic Medicine
12:38 Emma's this look makes me want to call her as marshmallow lol She looks so cute
Praying for a healing for her amen try cannabis oil and THC and worm medicine for animals to kill cancer amen
God bless this initiative and Mark s family😊
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 .
4:56/5:14
1/10
My year is 17 and one my brother EB patient my brother 10year
I am EB patient from pakistan
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.
This is such a great way to inform and inspire! Idk why there aren’t millions of views?
how is he doing?
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!