Archive for March 14th, 2016

The Global Down Syndrome Foundation and Megan Bomgaars, star of A&E’s Born This Way, have teamed up to continue the fight for further research of auto-immune disorders. Megan suffers from celiac disease, an auto-immune disorder that affects people with Down syndrome at a rate ten times greater than in the typical population. Megan launched Global’s celiac disease research and awareness campaign at the March 11th I Love You Dance Party where she danced the night away with 150 celebrants and encouraged fellow self-advocates to participate in a simple Down syndrome and celiac disease research program aptly named “Spit to be Fit!”

Through the Crnic Institute’s Grand Challenge Grant Program, Global funds research by Dr. Richard Spritz, M.D., Program Director for the Human Medical Genetics and Genomics Program at the University of Colorado School of Medicine. Dr. Spritz’ research could lead to a test that identifies people with Down syndrome who have the highest risk for celiac disease and other autoimmune disorders including type 1 diabetes, autoimmune thyroid disease, vitiligo, and rheumatoid arthritis. Early detection would allow early intervention and treatment and could have application to the broader population suffering from such autoimmune disorders.

Celiac disease is an autoimmune disorder where the affected individual has a hypersensitivity to the protein gluten—commonly found in wheat, barley and rye—which, when digested, causes damage to the small intestine. In addition to the common uncomfortable symptoms, some celiac sufferers with Down syndrome have symptoms including anemia and behavioral changes. Megan knows the challenges of celiac disease all too well. Though there is no benefit to a gluten-free diet for those without a celiac disease diagnosis, due to the high incidence of celiac disease in individuals with Down syndrome, experts recommend they get screened for the disorder with a simple blood test.

Louis “Louie” Rotella IV—the charming boy who inspired his dad to create the celebrated story of acceptance The Little King and His Marshmallow Kingdom—will inspire an audience of 1,200 when he takes to the runway as the 2016 Ambassador at Global’s Be Beautiful Be Yourself Fashion Show on Saturday, November 12.

“‘Life with Louie’, that is the saying around our house,” says his mom, Jill Rotella.  “Life with Louie is filled with joy, tears, laughter, Marshmallows, and lots of lessons in patience and humor.  Our lives are better because of the journey that we travel with Louie!  We will be proud and honored to be by Louie’s side during this next adventure on his journey as the 2016 Be Beautiful Be Yourself Fashion Show Ambassador!”

Each year, in addition to choosing 20 self-advocates to model in their fashion show, Global selects an ambassador who graces the front cover of their award-winning invitation. Ambassadors and their families are dedicated to garnering support for Global’s work towards significantly improving the lives of people with Down syndrome through research, medical care, education and advocacy.

Louie’s family owns and operates Rotella’s Italian Bakery Inc., in Omaha, Nebraska, founded in 1921. Baking is a family tradition that goes back five generations, and you can learn more about this dynamic family in this excerpt from Down Syndrome World magazine.