It was September 13, 2013 when Jim and Karen Raffone received the news that no parent should ever get– they were told that their child was sick. On that day, their now 7-year-old son, Jamesy, was diagnosed with Duchenne Muscular Dystrophy (DMD): a rare mutation of the dystrophin gene that results in severe muscle degeneration.
DMD affects about 300,000 boys worldwide, with approximately 20,000 cases in the United States. In DMD, the child’s exons (sections of DNA that code for the protein dystrophin) are deleted, duplicated, or cause an abrupt stop in the protein production process. The impaired exons then interfere with the rest of the gene being pieced together, which results in a mutation that causes the body to lack the protein needed to protect and rebuild muscle fibers. This leads to continuous muscle degeneration and premature death.
After receiving their son’s diagnosis, the Raffones then sought a number of professional opinions. From each, they were given the same heartbreaking prognosis from each doctor: “go home and love your son – there is nothing we can do.” Unsatisfied with accepting their child’s death sentence, Jim and Karen set out to reverse the seemingly insurmountable odds against them — this is when JAR of Hope was born.
Spearheaded by Jim Raffone, JAR of Hope is an organization that gives Jamesy and thousands of boys just like him the chance to beat a disease that currently has no cure. DMD has many variations, which makes finding a cure extremely challenging. JAR of Hope’s mission is dedicated to bringing awareness and raising funds directed to finding a cure.
Through various funding and awareness campaigns, JAR of Hope remains steadfast in its mission to knockout a disease that has, until now, remained undefeated. With each dollar raised, we will fight to finance the necessary research that could result in enhanced Duchenne treatment. The hope is to cure this horrific illness, and to preserve the innocent smiles of Jamesy and other boys suffering from Duchenne for as long as possible.
To learn more, or to make a donation, visit http://jarofhope.org.
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Miss Em’s, one of our favorite locally-based online retailers, just unveiled a ton of new arrivals! Keep reading for eight great frugal fashionista finds!
I always love doing these Look for Less blogs using Miss Em’s pieces! It always reaffirms why I love shopping with Miss Em’s so much! You can really update your wardrobe with SO many items for the price of just one or two of the designer versions!
Miss Em’s JUST got in some new pieces so I wanted to do another Look for Less post using a few of them! Enjoy (and click here to start shopping!) 🙂