My son Spencer’s disease:
Epidermolysis Bullosa
What is EB?
My son was born with Epidermolysis Bullosa, or EB, which is a rare connective tissue disorder with many genetic and symptomatic variations. A defect in his keratin gene caused him to lose nearly half of his skin while being born and then to produce hundreds of blisters every day, which had to be lanced and bandaged over the course of many years. He could scarcely be touched, as the slightest contact could tear off his skin. He even had blisters in his mouth, which necessitated having a feeding tube inserted into his stomach when he was just a few days old; he lived with the feeding tube for four years. He required 24-hour care, which I provided.
Why help?
Each year, 200 children are born with EB in the United States, but every day EB children and families struggle with the physical, financial, and emotional burdens of the disease. And while encouraging research suggests a future cure and treatment options, EB families still need our help today!
Help debra of America support thousands of EB families across the United States & find a cure.
Your contribution helps debra of America provide free Programs and Services to the EB Community and allows us to fund groundbreaking EB research research that is already pointing towards a cure! Help us fight EB, because the cost of doing nothing is too great.
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 2022 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.
Click Here to Visit Debra Now
debra of America | www.debra.org
P: 212-868-1573 x102 Toll-Free: 833-debraUS
We fight “the worst disease you’ve never heard of”
Please consider donating
because the cost of
doing nothing is too great.
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About Barbours Cut
If Clyde Barbour had his way in 1893 at 19 years of age, he would be off his father’s flatboat and in college, but his father still needed his help with the family trading business drifting down the Ohio and Mississippi Rivers; even so, he was able to propel himself to building thriving enterprises with operations not only in the U.S. but also in Europe and Mexico.
Barbours Cut is based on Clyde’s story. Later known as Captain Clyde Barbour, he lived a life of adventure and intrigue, including a public horsewhipping, a near-deadly run-in with Pancho Villa (the Mexican revolutionary), a dalliance with a glamorous French opera singer, and a lifelong struggle to protect and uplift the lives of both his serial-philanderer brother and his alcoholic father.