Benefit for EB Research Set for Sunday in Minster

Staff Writer

An “I Refuse EB” benefit on behalf of Eli Monnier, who suffers from epidermolysis bullosa (EB) is planned for Sunday, May 21, from noon to 4 p.m. at the Halls of Hanover. 86 N. Hanover Street in Minster.

This multi-consultant sale includes: Norwex, Premier Designs, Origami Owl, LulaRoe, Thirty-One, Scentsy, Mary Kay, Younique, LipSense, Herbal Life, It Works, Shaklee, Tastefully Simple, DoTerra and Young Living Essential Oils, Plumeria Bath, Perfectly Posh, UsBorne Books, Rustic Farmhouse Designs, Abby & Ann Boutique, raffle items from consultants and local businesses. Snack foods, pop and bottled water will be on sale. Organized by Amanda Boekman. You can call her at (419) 733-3224 for more information.

 Eli Monnier was born on August 8, 2015 missing nearly all of the skin on both of his feet. He was immediately diagnosed with Epidermolysis Bullosa (EB), a connective tissue disease caused by a lack of Collagen VII (the glue that holds our layers of skin and mucosal tissues together) and was in the NICU for 3 weeks as his parents learned how to provide nutrition and wound care to him. Genetic testing confirmed Eli’s form is one of the more severe forms, leaving him with a life expectancy of 25 years but often causing childhood death due to infections and organ failures. EB is not only a skin condition, but it affects nearly every organ of the body due to chronic pain and inflammation as well as internal blistering.

There currently is no cure for EB and Monnier will not outgrow his condition. In fact, it becomes worse over time and more debilitating to the body as wounds are difficult to heal and scar tissue can fuse body parts together. I Refuse EB invests 100 percent of its donations to Dr. Tolar at the University of Minnesota, a release said. Dr. Tolar has finished his research on the cure for EB but needs funding to begin clinical trials. Eli’s parents are hoping to enroll him in this trial as soon as it becomes available. Donations from this fundraiser will go towards Dr. Tolar’s EB research and Clinical Trials.

Minster Elementary School is also doing Spirit Week this week in honor of Eli (and another little girl with Ehlers Danlos Syndrome who previously  attended Minster).

Eli’s mom Lindsay Monnier notes, “We are so honored that the school is raising awareness for Eli’s condition and want to help us CURE EB as much as we do.”