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The Big Ride for EB is back!
Another cross country and back bicycle journey to explore awareness for Epidermolysis Bullosa, hope for families touched by EB, as well as funds for debra of America.
Thank You to Our Donors!
To learn more about Robb's Journey, please visit his official website at www.thebigrideforeb.com
Also, check out Robb's blog at www.crazyguyonabike.com/doc/RobbFreedEB
Article from Post Star-
Glens Falls, NY - May 11, 2016
Article from Times Union-
Albany, NY – June 15, 2016
Article from the Saratogian -Saratoga Springs, NY –
August 9, 2016
Video by CBS 6 Albany,NY -
June 24, 2017
Article from Epidermolysis Bullosa News -
March 5th, 2018
Video from KALB Alexandria, Louisiana -
April 20th, 2018
Blog from EngageHealth.com
May 14th, 2018
Article from Rawlins Times Rawlins, WY
May 31st, 2018
Article from Ritzville Time- Ritzville, WA
July 26, 2018
Video from KMEG CBS
Sioux City, Iowa August 28th, 2018
Video from KBZK Bozeman, Montana -
August 1st, 2018
Article from Sheridan Media-Sheridan, Wyoming-
August 5th, 2018
Video from WPXI Pittsburgh, PA
Oct 15th, 2018
Article from the Post Star Glens Falls, NY
Nov 24th, 2018
Video from KOTA ABC
Rapid City, South Dakota August 20th, 2018
Video from KDLT NBC
Sioux Falls, South Dakota August 25th, 2018
Video by WGEM NBC Quincy, IL
Sept 14th, 2018
Article from Herald-Whig Quincy, IL
Sept 15th, 2018
Video from WAND TV Champaign, IL
Sept 21st, 2018
Article from Daily Record Parsippany, NY
Oct 30th, 2018
Check out some of the images from Robb's 2018 Big Ride for EB!
What is EB?
Epidermolysis Bullosa (ep-i-der-mo-lie-sis bu-low-suh), or EB, is a rare connective tissue disorder with many genetic and symptomatic variations. All types of EB share the major symptom of extremely fragile skin that blisters and tears from the slightest friction or trauma. Internal organs and bodily systems can also be seriously affected by the disease. EB is always painful, often pervasive and debilitating, and is in some cases lethal before the age of 30. There is currently no cure or treatment for EB. Pain management, wound care, and preventative bandaging are the only options available. Those born with Epidermolysis Bullosa are often called “Butterfly Children” because as the analogy goes, their skin is as fragile as the wings of a butterfly.
There are about 25,000 people living with EB in the US. It occurs in every racial and ethnic group and affects both genders equally. For a more in-depth and comprehensive understanding of Epidermolysis Bullosa, please also check out debra of America’s explanation by clicking here.
What is debra of America?
Because the cost of doing nothing is too great. This axiom defines debra of America's mission and directs all that we do. We are dedicated to improving the quality of life for those living with EB. To achieve our mission, we do two things in parallel: we provide free programs and services to the EB Community in the US, and fund the most innovative research directed at symptom relief and a systemic cure.
In 2017 alone, our largest program, the Wound Care Distribution Program, sent over $1 Million worth of specialized bandages. That translates to over 108,000 pieces of wound care sent to families across the US. Our research funding identified the genetic basis of EB and supports the science, which is at the forefront of gene and stem cell therapy, RNA repair, protein replacement, and inhibition of squamous cell carcinoma.
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On behalf of debra of America, thank you for your generous donation!
Please visit http://doublethedonation.com/debra to check if your employer has a Matching Gift Program.
Matching gifts may double or even triple your contribution’s impact.
To learn more about debra of America's programs and services please visit www.debra.org.
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