Bringing new Hope to Families Living with Rare Disease

A fter years of struggling to find a diagnosis, Sophie and Jordan New learned through genetic testing that their seven-year-old son, Cooper, has FBXO11. The disease is an Intellectual Developmental Disorder with Dysmorphic Facies and Behavioral Abnormalities (IDDFBA). This ultra-rare disease is prevalent in less than one in a million people. The family traveled from Texas to visit Harrington Discovery Institute in Cleveland and discovered a tremendous amount of hope. They were aware of the challenges of creating treatments for rare and ultra-rare diseases because the markets are often too small to incentivize pharmaceutical companies.

Harrington Discovery Institute gave them hope through its commitment “to accelerate promising discoveries into medicines for unmet needs.” Harrington Discovery Institute’s Oxford-Harrington Rare Disease Centre is helping to find cures for rare and ultra-rare diseases like FBXO11. While Cooper is verbal, he doesn’t speak. Sophie and Jordan were told that he would never walk, but Cooper took steps at age five. Some of the daily therapies the family works on with Cooper are teaching him how to use silverware and how to walk up and down the stairs. He continues to make big strides each day.

Show your support for rare disease research to help patients like Cooper by making a gift today to Harrington Discovery Institute: https://www.harringtondiscovery.org/cure

Harrington Discovery Institute partnered with The University of Oxford to establish The Oxford-Harrington Rare Disease Centre with a shared mission to advance cures for rare disease. Through a global affiliation with Morgan Stanley, donor advised funds can help advance cures. Make your charitable donation today: https://harringtondiscovery.org/MSGiftCures

University Hospitals is one of the nation’s leading health care systems, providing patient-centered care that meets the highest standards for quality and patient safety and have received numerous awards and recognitions from some of the most prestigious institutions in the country for our leadership and exceptional patient outcomes. As an accountable care organization, we foster long-term patient-provider relationships that help promote preventive care, increase wellness and healthy behaviors, decrease emergency episodes, and prevent hospitalizations. To learn more: https://www.uhhospitals.org