(Merk de fleste av disse videoen er lagd for fundraising øyemed - men de er informative i forhold til å lære noe om EB)
A feature on research carried out by Prof. John McGrath was shown on the UK Channel 4 News over the weekend.
The link to the film click here
debra UK has been funding Prof. McGrath’s work for many years and we have been in close touch with him about this project since its inception. Two of our Board members are involved in the initial trial.
Press Release prepared by Dr Clare Robinson last week in preparation for the broadcast; Press Release 15/16 April 2009, click here
Clearly, these are early days for this particular project and there is much still to be done but the early results are encouraging. debra UK is working hard to seek funds to continue this trial.
John Dart, UK
This is Me -Touched by a Butterfly is an insightful documentary in which we meet Liz Scanlon, her husband Gary, and their 4-year-old daughter Claudia, who was born with the genetic skin condition Epidermolysis Bullosa (EB). The documentary offers a unique insight into the lives of a very brave family who deal with EB on a daily basis. They demonstrated courage and determination, allowing the viewer to see that through adversity, the human spirit can rise above it. You can view a clip from the programme above.
For more information on the documentary please contact the DEBRA Ireland office. Images courtesy of the producers Animo Television.
http://www.youtube.com/watch?v=Vwnlyjn_Fis
Epidermolysis Bullosa Awareness Video:
File name: ebawareness.mpg:
Download link: http://www.mediafire.com/file/d2lxc0mrznd
Download link: http://www.youtube.com/watch?v=Gf1G_7czSfk
Download link: http://www.youtube.com/watchv=OkI53dQ8p94&feature=channel_page
Epidermolysis Bullosa Awareness video. For more information about EB, please visit www.ebinfoworld.com
Epidermolysis Bullosa (EB) Awareness Celebrities Chip In:
Celebrities like Courtney Cox, Eva Longoria, Orlando Bloom, Jessica Simpson and Gwen Stefani chip in to raise awareness for Epidermolysis Bullosa and raise money to find a cure.
Download link: http://www.youtube.com/watch?v=obM1tVHJXUs
Alfred Lane, MD, discusses EB research and treatment,
What is epidermolysis bullosa (EB)? How do EB patients live with such a devastating disease? What are the current treatments and research? Alfred Lane, MD, is a dermatologist at Lucile Packard Children's Hospital at Stanford and Professor and chair of the department of dermatology, at the Stanford University School of Medicine. In this March 20, 2008 video, Dr. Lane discusses "recessive dystrophic epidermolysis bullosa" (RDEB) and we see video of 11-year-old Garrett Spaulding in his clinic appointment with Anna Bruckner, MD, chief of pediatric dermatology. Packard Children's Hospital in Palo Alto, CA provides the only EB clinic for kids in the Western region of the U.S.
Download link:
http://www.youtube.com/watch?v=c2S-IV6oZ_E&feature=related
"Walk a Mile in My Shoes" Relay-Rally for National Epidermolysis Bullosa Awareness Week is our first national EB awareness event, directed toward fostering a greater understanding of this devastating genetic disorder. We invite EVERYONE to come out and participate!
Download link: http://www.youtube.com/watch?v=9W7kJDRcTDY
In November 2008, the Alberta Children's Hospital held a radiothon to raise money. Me and my mom were chosen as guest speakers. A couple months beforehand, a few people came to my house and interviewed us. They then put the interviews to music and played them throughout the first week of November. Also, don't complain about the terrible music, I can't do anything about it...
Download link:
http://www.youtube.com/watch?v=d5DSS3AoV2s&feature=related
Tatum's Journey for EB Awareness,
Promoting awareness of EB (Epidermolysis Bullosa):
Download link:
http://www.youtube.com/watch?v=50l5XNhEHh4&feature=related
EB in 90 seconds, the heartache involved in caring for a child with EB and how the public can help
Download link:
http://www.youtube.com/watch?v=1d5j66w-Upw&feature=related
Wounds That Need Help To Heal, Kids with Epidermolysis Bullosa (EB) have to wear gauze their entire lives. Even a hug will tear their skin.
Download link:
http://www.youtube.com/watch?v=VLZ1OVIEabQ&feature=related
EB- Butterfly Children #1, An intimate look at one of the most frightening skin disorders known to man Epidermolysis Bullosa (EB) and the organization working to find a cure. We'll introduce you to three families fighting to save the lives of their children.
Download link:
http://www.youtube.com/watch?v=F3DvPwlFFtk&feature=related
EB - Butterfly Children #2, An intimate look at one of the most frightening skin disorders known to man Epidermolysis Bullosa (EB) and the organization working to find a cure. We'll introduce you to three families fighting to save the lives of their children.
Download link:
http://www.youtube.com/watch?v=vHCTCikarsw&feature=related
EB - Butterfly Children #3, This week on Profiles In Caring, a look at one of the most frightening skin disorders known to man and the organization working to find a cure. Epidermolysis Bullosa or EB causes blisters to form over much of the body surface of children. A recessive gene causes the disorder and both parents have to be carriers. Even then, only one in four of their children may actually get EB. We'll introduce you to three families fighting to save the lives of their children while at the same time hoping researchers at Stanford University can find a cure Mothers 2 Mothers (south for this lethal disorder as soon as possible. The emotions are high, the children so innocent and the parents so giving and caring. This is an episode you will not soon forget.
Download link:
http://www.youtube.com/watch?v=XKriLNdunLk&feature=related
Spansk språkelig video om EB:
Download link: http://www.youtube.com/watch?v=J7XjjaC4JNk
