EB – Epidermolysis Bullosa is a rare genetic condition casing a person skin to be very delicate. where even a simple seem can cause blistering to occur. Those affected must have their entire body continuously wrapped in bandages. But researchers at the University of Minnesota have discovered a cure.

Physicians at the University of Minnesota and University of Minnesota Childrens Hospital, Fairview have set the path to a cure for a young boys fatal genetic skin disease, recessive dystrophic epidermolysis bullosa (RDEB), by using a cord blood and bone marrow transplant. Nate Liao, a 25-month-old from Clarksburg, New Jersey, underwent the experimental therapy in October 2007.

What is EB?

Epidermolysis Bullosa (EB) is a rare genetic skin disorder that causes the skin to be so fragile that the slightest friction can cause severe blistering – inside and outside the body. It is present in 1 out of every 50,000 live births in the US. It can occur in every racial and ethnic group, and affects both sexes equally. There is currently no cure, and the research is on-going. Severe forms of EB cause patients to live with constant pain and scarring. The worst forms of EB lead to eventual disfigurement, disability and often early death. There are many patients who are diagnosed with milder forms, which, while they can be extremely difficult to live with, are non-disfiguring and non-lethal.

What is DebRA of America?

The Dystrophic Epidermolysis Bullosa Research Association of America (DebRA), was founded over 30 years ago in New York City and is the only national nonprofit organization dedicated to funding research and providing supportive services and programs for those with Epidermolysis Bullosa (EB) — The Worst Disease You’ve Never Heard Of.™ Some of the programs and services we provide are; wound care supplies shipped directly to patients, an EB Nurse Educator, education, new family packages, and money for research towards finding a cure for EB. There is currently no cure, and the research is on-going. Treatment is supportive and includes daily wound care, bandaging, and pain management. For more information, visit debra.org

DebRA of America, Inc.
16 East 41st Street, 3rd Floor
New York, NY 10017
p: 212-868-1573
f: 212-868-9296
debra.org
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HIV was thought to be incurable, but after undergoing risky stem cell transplant surgeries, several patients no longer exhibit the deadly virus. Scientist Dr. Hans-Peter Kiem takes that idea a step further and shares his pioneering research using new gene-editing techniques. His bold vision may one day allow patients anywhere in the world to receive a single injection to stop HIV and other deadly diseases in their tracks.

Special thanks to core the TEDxSeattle organizing team, 100+ volunteers, and our generous partners – without you, this experience would not be possible. Find out more about our talks, speakers, entertainers, activities, and year-round events at TEDxSeattle.com.

In the spirit of ideas worth spreading, TEDx is a program of local, self-organized events that bring people together to share a TED-like experience. At a TEDx event, TED Talks video and live speakers combine to spark in-depth discussion and connection in a community setting. These events are branded TEDx, where x = independently organized TED event. The TED Conference provides general guidance for the TEDx program, but individual TEDx events are self-organized.

Hans-Peter, the Director of the Stem Cell and Gene Therapy program at the Fred Hutchinson Cancer Research Center, is known as a pioneer in the development of new gene-editing technologies. Through his work as an oncologist providing bone marrow transplants to leukemia patients, Dr. Kiem learned it’s possible to modify genes in blood marrow stem cells and convey those genetic changes to a patient.

Hans-Peter and his team hope to achieve cures for diseases like HIV, cancer, sickle cell anemia, and other blood disorders with this ability to repair or modify genes by editing stem cells to carry healthier or disease-resistant versions of genes before transplant. He is currently pioneering “in vivo” and “ex vivo” approaches to make gene therapy and gene editing more broadly available and accessible to those living with HIV, especially in resource-limited settings.

He received his M.D. and Ph.D., at the University of Ulm in Germany. Hans-Peter came to the United States in 1988 and completed research at Stanford University. He received a degree in internal medicine at Vanderbilt University before an oncology fellowship at the University of Washington led to his work with the Fred Hutch.

This talk was given at a TEDx event using the TED conference format but independently organized by a local community. Learn more at https://www.ted.com/tedx
Dr. Hans-Peter Kiem, the Director of the Stem Cell and Gene Therapy program at the Fred Hutchinson Cancer Research Center, is known as a pioneer in the development of new gene-editing technologies. Through his work as an oncologist providing bone marrow transplants to leukemia patients, Dr. Kiem learned it’s possible to modify genes in blood marrow stem cells and convey those genetic changes to a patient.

Dr. Kiem and his team hope to achieve cures for diseases like HIV, cancer, sickle cell anemia and other blood disorders with this ability to repair or modify genes by editing stem cells to carry healthier or disease-resistant versions of genes prior to transplant. This talk was given at a TEDx event using the TED conference format but independently organized by a local community. Learn more at https://www.ted.com/tedx
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Created on Dec 12, 2012
This video looks at diabetic retinopathy, the most common eye disease among working-age adults in the U.S. and a leading cause of blindness in people with diabetes.
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Jan Aage Fjortoft, Steve Nicol, Craig Burley join Dan Thomas on the ESPN FC panel for Extra Time.

0:00 With Liverpool on course for a Europa League spot, were injuries the only thing that held the Reds back or Jurgen Klopp’s tactics as well?
02:24 Would Stevie rather have Liverpool in the Europa League or not play in Europe at all?
03:45 Jan, where will Borussia Dortmund’s Jadon Sancho end up this summer: Manchester United, Liverpool or somewhere else?
10:59 Craig, what area of the team should Pep Guardiola and Manchester City strengthen at the end of the season?
11:37 Can it be said that Cristiano Ronaldo’s time at Juventus has been a failure?

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