EB is the Worst Disease You Have Never Seen

This is tough to watch but these babies need our help.  Life expectancy for those who do live is often less than 30 years and filled with blistering, terrible pain, infections, scarring, itching, amputations, bullying, and catastrophic medical bills.

What is EB?

EB babies suffer with blisters, skin loss, extreme pain, and death.

In EB's most severe form, many babies don't live to celebrate their first birthday

EB (epidermolysis bullosa) is a genetic blistering skin disease that causes a baby’s skin to blister and peel off creating extreme pain and death in its most severe forms. EB is caused by a gene mutation that creates a very weak bond between the baby’s skin layers in the epidermis and dermis. Friction, pressure, and heat on the skin causes blisters and skin loss. Even a hug from mom or dad can cause life-threatening blisters and skin loss, and extreme pain that can’t be controlled with our best medicines. EB affects both genders and all ethnicities equally that is not getting the attention it needs to find a cure.

No Baby Blisters is the voice for over half a million babies, children, and young adults worldwide suffering from EB (Epidermolysis Bullosa)

Help us rescue EB babies from the terrible pain and death caused by EB. Mutated genes cause the skin to blister off resulting in extreme pain, infection, scarring, amputations, and death. A cure is urgently needed. *Pictured is No Baby Blisters' spokesperson Baby John

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In EB's most severe form, many babies don't live beyond a year

Life expectancy for those who do live is often less than 30 years and filled with blistering, terrible pain, infections, scarring, itching, amputations, bullying, and catastrophic medical bills.

Like a butterfly's wings, their skin is so fragile, a simple touch can cause severe pain. Hugs shouldn't hurt

Easily injured skin creates severe pain, blisters, infection, and scars. Forever bandaged, their skin is an inescapable cocoon separating them from their parents' loving hugs. *Pictured is No Baby Blisters' spokesperson Baby Mary.

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Why hasn't this disease been cured?

Orphan diseases are conditions affecting fewer than 200,000 people nationwide, like EB, Cystic Fibrosis, Lou Gehrig's Disease, or Tourette Syndrome.* Cures for orphan diseases, like EB, go unfunded by big pharma and government.

*National Institutes of Health

No Baby Blisters Offers great hope in its multimodal Fast Cure Plan

Our research team includes the medical field's top doctors, pioneering researchers, scientific innovators, and FDA experts to create an affordable EB cure to end the pain and death.

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Our Dedicated Doctors

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Aaron Tabor, MD

Aaron Tabor, MD, Founder of No Baby Blisters, is a NIH-funded skin researcher. He founded Gene Facelift and GenArmor, a biotechnology laboratory developing cures for rare blistering skin diseases, wound healing, and anti-aging improvements in cosmetic appearance.  Read Dr. Tabor's EB Research Review.

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Bernard Cohen, MD

Bernard Cohen, MD, is a Professor of Pediatrics and Dermatology, boarded in Pediatrics, Dermatology, and Pediatric Dermatology at one of American's leading hospitals with a special interest and research in Epidermolysis Bullosa (EB) blistering skin disease and skin infections.

Our Passionate Staff

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Tyler Falwell

Executive Director of No Baby Blisters

Tyler Falwell is using the latest technology to obtain the donations for our Fast Cure Plan from people, organizations and businesses, crowdfunding and peer-to-peer campaigns. He also oversees our grant process and venture philanthropy for recurring donation streams.

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Mari White

East Coast Communications Director, New York

Mari White is a two-time Emmy Award-winning TV host, model, actress and a multi-award winning producer. She has graced the cover of multiple magazines, been featured in numerous print ads, walked fashion week runways, and appeared in multiple films, shows, and commercials. As a versatile host, her credits range from Monday Night Football with ESPN to the first-ever live online morning show, AOL Rise.

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Sally Colon

West Coast Communications Director, Los Angeles

Sally Colon brings to No Baby Blisters 20 years of broad-based knowledge of the entertainment industry.  Her feature documentary, "Women Like Us," was an official selection at the 2017 Los Angeles Women's International Film Festival.

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Our Fast Cure Plan

  • Patented biotechnology that will replace mutated skin genes with healthy ones.
  • Biotechnology that will replace mutated skin genes with healthy genes. Healthy genes produce healthy skin proteins needed to keep the skin from blistering off.
  • Molecular research that can reduce inflammation and speed healing.

Other's studies have failed in critical ways

Our goal is to create an affordable cure which means we need to get FDA clearance and possess the intellectual property rights to the cure.  A lot of EB work to date was done by scientific teams who lacked experience with the FDA approval process and intellectual property.  Their studies were too small for the FDA to use.  These individuals meant well but they did not advance us toward the cure.  In fact, a lot of the time, effort, energy, and hope was wasted.

From this early work, we know that there may be ways to cure EB with treatments that could cost over $2 million per patient.  That is not acceptable to us.  There are half a million people suffering from this disease and the cure has to be a safe, effective, and affordable.

No Baby Blisters is committed to getting this cure through the FDA and to these patients fast and at an affordable price.

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What sets our Doctors and Fast Cure Plan apart from others' failures?

  • Proven experts at performing meaningful, broad-spectrum studies that are affordable cures
  • In-depth experience navigating FDA-approval pathways to market-ready treatments
  • Research has already started with Dr. Cohen, Professor of Dermatology at a #1 leading hospital

Our Challenge: A Fast Cure for EB babies suffering and dying

  • Securing $10 million in research donations for our Fast Cure Plan
  • Inviting family, friends, and colleagues to help
  • Raising public awareness and social media support
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How can we expedite the Cure to stop EB pain and death?

We must all partner together and join corporations, organizations, and other individuals who are able to donate research funds (even small amounts help!) to our Fast Cure Plan to end this heart-wrenching disease.  Will you join us?  Can we count on you to help EB babies?

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View the terrible pain and death caused by EB

Jonathan Pitre's Journey with EB

Powerful video of Jonathan Pitre who suffered from EB.  People who watched this video described him as a "brave young boy" who "does not deserve the pain and suffering"

Jonathan Pitre Tribute (2000-2018)

Jonathan Pitre was for many the face of EB, as someone who suffered from a great deal of pain yet maintained a positive outlook no matter how bleak the outcome looked. For many, including No Baby Blisters, stories like Jonathan's is why we will not stop until the suffering ends with a cure.

SportsCenter Tribute to Jonathan Pitre

14-year-old Jonathan Pitre is an avid hockey fan who suffers from Epidermolysis Bullosa, one of the most painful conditions known to modern medicine. But his courage and determination to live is unlike anything in sports.

Baby Mary’s Courageous Life Story

As Baby Mary has grown, open wounds and the marks from years of trauma to her skin have left their scars. People bully her with their stares and thoughtless questions. Baby Mary's strength and positive attitude inspires everyone to tears. We are proud to have her as our spokesperson.

Help us rescue EB babies from terrible pain and death

Your Donation Literally Saves Lives!

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This is the leg of Baby John. Your tax-deductible donations sent him life-saving bandages and ointments to save his life until we can find a cure for EB. Right now there is no cure for EB, so Baby John is still fighting for his life in severe pain. Your donation today will accelerate our Fast Cure Plan research for this terrible disease. In the most severe cases, babies born with EB do not live to celebrate their first birthday. Together, we can change this. This difference in Baby John’s leg is dramatic — and we can do this more often and better with your help! Join us to find an EB cure. And if you’ve ever wondered if your donation “makes a difference,” look at Baby John. It does!

Give today and see your gift make double the difference! A friend of No Baby Blisters will match every gift given before December 31st, up to $10,000.

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Meet Baby John and Baby Mary

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Your Donations Saved Baby John's Life

“PLEASE HELP ME.”

"I need your help for my son to survive."

The father’s depressed plea rang out. His son Baby John, not yet three days old, lay suffering in a bed with severely painful blisters and gaping wounds that threatened his very life. These were bloody blisters and wounds the father could neither heal nor stop from emerging on his son’s tiny face and body time and time again. Time was running out.

"The blister wound on his leg is the worst without any skin from his ribs all the way down to the tips of his toes."

When Baby John was born, his parents learned he had EB. They had never heard of the disease. Now immersed in their own daily struggle and nightmare, they are all too familiar with the heartbreak that accompanies it: constant cries of pain, emerging blisters on the baby’s face, head, chest, arms, hands, fingers, legs, feet, and toes, a lack of weight gain due to bloody mouth, tongue and gum sores, and, reopened and bleeding wounds at every painful bandage change. And, for Baby John, the disease is getting worse every day.

"It's so painful to see as parents. I have to hold Baby John down so my weeping wife can change his bandages while we watch him bleed, hurt and cry. We feel helpless and numb."

The infant had been in the hospital three weeks in excruciating pain when the father’s desperate cry came to No Baby Blisters. Of critical concern was the huge wound on the child’s right leg that had no skin from the infant’s lower ribs to his toes. With no access to the type of ointments and advanced bandages that could temporarily help, the father was concerned for his son’s life. Every bandage changed tore more skin away enlarging the wound increasing the risk of death from infection and dehydration. The infant had already lost a toe, and the distraught father knew the danger this wound posed. He prayed for help.

That help came. Thanks to the generous support of our donors, No Baby Blisters was able to immediately send Baby John’s father the much-needed funds for ointments and advanced bandages that saved his son’s leg, which saved his very life!

Baby John’s father said he is now in a waiting game—waiting to see what toll this disease will take on his son next. His blisters, pain, and skin loss continue putting his life at risk. His toes have fused together. At No Baby Blisters, we are working tirelessly, so that what comes next for Baby John and his family is a cure. Baby John and the other 500,000 children suffering from EB around the world deserve a life free of pain and full of hope.

“We are praying for a miracle because he's crying in pain. A cure is necessary for all babies suffering from EB’s cruel pain,” said Baby John’s father. "I will do everything possible to cure my son. I got a second job now working 16 hours a day to help pay the medical expenses. I'm looking forward to No Baby Blisters help and close interest in my son's pain relief and cure."

Positive life-saving work is already being done with your help until we find a cure. Let us continue to help Baby John and others like him. Finding a life-saving cure is urgent. Donate now.

We thank Baby John for being a No Baby Blisters' spokesperson.

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Your Donations Give Baby Mary Hope

“I COULDN’T DO ANYTHING AT ALL.”

Baby Mary’s mother described the helplessness she felt at seeing her child lying in the Neonatal Intensive Care Unit. After receiving the news that her child had EB, Baby Mary’s mother watched the doctor and nurses go in and out, caring for her newborn while she could only stand by. She remembers bandages and blood and a feeling of utter helplessness at not being able to do anything to stop her infant’s pain—and it almost made her collapse with grief and despair.

For Baby Mary’s father, the emotional challenges came in waves. First was the pain of separation not being able to bring his newborn daughter home, then the hardship that came when the doctors really didn’t know what was wrong with her, and, finally, the devastating news that his precious baby girl had EB.

Baby Mary’s mother and father are not alone. Parents all over the world are helplessly watching their babies suffer from the excruciating pain of ongoing blistering, bruising and sloughing skin. For these children, as Baby Mary’s mother describes, even diapers can cause the little ones’ skin to blister and rub off. Extreme temperatures and moisture cause bruising. And all of this leaves scars—emotional scars, as well as physical scars.

As Baby Mary has grown, so have the tangible signs of her disease—the open wounds and the marks from years of trauma to her skin. People bully her with their stares. They ask thoughtless questions. Baby Mary’s mother and father try to shield their daughter from any additional pain that may be brought on by others’ curiosity.

When it comes to caring for a child with EB, however, Baby Mary’s parents need not look far for the source of their strength. It is Baby Mary herself that gives them the encouragement they need. They are so thankful for their daughter. They say her big bubbly personality, smile, and bright eyes combined with her timely and encouraging words are enough to keep them going. As she has grown, she has taken on a motto: “We are strong together.”

“It's just amazing looking in her eyes, to see the strength that she has, and the physical appearance shows so much pain,” said her mother.

The family admits that it would mean the world to them for people to donate to find a cure for EB—not only for them but for all who suffer.

“It would avoid parents and kids having to go through all the heartache and pain that we went through when we had our daughter. … and it would help them, the kids, not have so much pain, and it would reduce medical bills for the families, because the medical supplies are extremely expensive. And, it would allow the kids to live somewhat of a normal life,” said Baby Mary’s mother.

Baby Mary said a cure would make her feel “happy.”

Help Baby Mary by helping us find a cure. Donate now.

We thank Baby Mary for being a No Baby Blisters' spokesperson.

Founding Board

If you're interested in joining our Founding Board email us at [email protected]

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Aaron Tabor, MD

Aaron Tabor, MD, Founder of No Baby Blisters, is a NIH-funded skin researcher. He founded Gene Facelift and GenArmor, a biotechnology laboratory developing cures for rare blistering skin diseases, wound healing, and anti-aging improvements in cosmetic appearance.  Read Dr. Tabor's EB Research Review.

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Tyler Falwell

Executive Director of No Baby Blisters

Tyler Falwell is using the latest technology to obtain the donations for our Fast Cure Plan from people, organizations and businesses, crowdfunding and peer-to-peer campaigns. He also oversees our grant process and venture philanthropy for recurring donation streams.

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Rio Phior

Sagon-Phior.com Founder and Chief Creative Director

Rio has worked with over 80 global and national non-profits helping to position, craft and execute their brand marketing strategies. Rio believes that No Baby Blisters is one the most important causes she has experienced in her lifetime. She hopes to help make a major impact in helping to end this devastating, life threatening disease. By supporting the efforts of organizations like this and others, Rio will forever remain hard at work in her purpose to elevate the human condition.

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Our Logo's Meaning

The butterfly escaping its cocoon represents an EB cure empowering EB babies to escape their bandages, pain and death to live normal healthy, happy lives.

Subscribe now to stay current on EB research, treatments, and updates on how your money saved lives.

No Baby Blisters
5550 Tech Center Dr. Suite 305
Colorado Springs, CO 80919
Contact us:
[email protected]
(469) 431-2343

Read Our Mission Statement

No Baby Blisters is a recognized IRS 501(c)(3) charity. All donations are tax-deductible. ©2018 No Baby Blisters. All Rights Reserved. EB Angels™ and Hugs Shouldn't Hurt!™ are trademarks of No Baby Blisters. Privacy Policy, Cookies Policy & Terms of Use