Epidermolysis Bullosa Friends

To find out more about EB PLEASE visit: www.ebpatient.com To find out more about The EB Relay/Rally go to: www.ebrelay.org To find out how you can help people with EB go to: www.debra.org AND www.ebkids.org If you or any of your family or friends have EB, you may want to join us at The EB FRIENDS SOCIAL NETWORK at http://ebfriends.ning.com

Category:

People & Blogs

Tags:

• Epidermolysis
• Bullosa
• Disease
• Kids
• Child
• Cure
• Awareness
• EB
• Skin
• Cancer
• Debra
• EBMRF
• PEZ
• Jack
• Johnson
• Carly
• Simon
• Upside

[ugabutler]

screw you youtube... this video is for sick kids with a disease... and all they can think to do is mute the friggin music... go jump off a cliff youtube...

[magicpez]

@ugabutler That's ok. I really shouldn't have used another person's music without their permission. The first song in the video was Upside Down by Jack Johnson and the 2nd was You Got A Friend by Carole King. : )

[ugabutler]

this video is amazing.... my cuz has this and i hope they find a cure cuz he deserves the freedom to run and jump and play just like any other kid

[kellyatjcb1]

i wish when i was diaginoised 41 years ago i did not know of other people who had this. i was made front of, stared at. I couldn't play with other children because parents thought their child would get it.

[washingsoap]

great job

[washingsoap]

great job

[nocookie4you]

Great job! I love it, and my syblings are so cute here! I can't help but love this video.

[hollymarg]

What great people.

[Shadow8P]

My band is playing at the nearby walk in Saint Thomas. A 5 year old girl with EB is walking a mile on a track, and we're playing a show after.

[liberty1960]

Please join us in October for "Walk a Mile in My Shoes" Relay-Rally for National EB Awareness Week, our first national awareness event, crossing the U.S. from New York to California.

Join the Relay at any point, for any distance; attend one of EIGHT Rallies; or participate in other activities and fundraising efforts. This campaign is supported by DebRA of America and EB Medical Research Foundation! Just google the words "epidermolysis" and "relay" and you will find us!