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Bringing New Hope to Families Living with Rare Disease

Posted on March 31, 2022 in Center for Rare Diseases

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Harrington Discovery Institute aims to create medicines and cures that help families who may have otherwise lost hope. Developing cures for rare and ultra-rare diseases has its challenges, but patients like Cooper New provide inspiration to discover new treatments.

Sophie and Jordan New learned through genetic testing that their seven-year-old son, Cooper, has FBXO11, after years of struggling to find a diagnosis. FBXO11 is an Intellectual Developmental Disorder with Dysmorphic Facies and Behavioral Abnormalities (IDDFBA). This ultra-rare disease prevalent in less than one in a million people.


Creating Connections

Sophie and Jordan, along with grandparents Rusty and Liz Cooper, immediately set out to learn as much as possible about FBXO11 and any potential treatments for Cooper. Sophie and Jordan started a Facebook group for FBXO11 families to find support for this ultra-rare disease. In just three years, the group has 105 members across the world, creating a community of support for those who have a family member diagnosed with this disease.

Rusty, a financial advisor at Morgan Stanley, reached out to colleagues and learned about Harrington Discovery Institute through Morgan Stanley GIFT Curesā„  powered by Harrington Discovery Institute. This program provides opportunities for new and veteran philanthropists to combine their resources to magnify the impact of their medically related giving, whether they wish to focus on a specific disease or across a broader spectrum. It is an opportunity for philanthropists, foundations, family offices and companies interested in learning collaboratively from drug development experts and providing catalytic support to bring cures and treatments to market.

Finding Hope

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. But 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 disease like FBXO11.

The Oxford-Harrington Rare Disease Centre (OHC) is a partnership between Harrington Discovery Institute at UH and the University of Oxford in the UK, combining world-leading strengths in research and therapeutics development, to address unmet need in rare diseases.

Showing Support

On Rare Disease Day on Feb. 28, Cooper's family shared their experience and journey at the Harrington Discovery Institute webinar “Advancing Novel Treatments for Neurological Rare Diseases.”

While Cooper is verbal, he doesn’t speak. Sophie and Jordan were told that he would never walk, but 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. These miracles provide hope for his family as Cooper 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.

Bringing New Hope to Families Living with Rare Disease

Cooper (center) with his parents, Sophie and Jordan New and grandparents, Rusty and Liz Cooper


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Bringing new Hope to Families Living with Rare Disease

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