“Our daughter, Frances, has a one-in-a-billion diagnosis, and we’re trying to save her life.”
– John & Zoe
In 2021, our daughter Frances Gourley was diagnosed with a one in a billion genetic disease called DHDDS. At age 11, Frances has already begun to experience acute symptoms that will progressively worsen. She suffers from epilepsy, full body tremors, lack of muscle control in her arms and legs, photosensitivity, migraine, nausea, and confusion. We are heartbroken and terrified as we watch our beautiful daughter’s decline.
70% of rare diseases are diagnosed in childhood and more than 90% of rare diseases including Frances’ are without an FDA approved treatment. Kids with DHDDS and other rare, neurodegenerative diseases experience the symptoms of mental and physical decline that are usually associated with diseases like Alzheimer’s and Parkinson’s. Their debilitating effects include confusion, seizures, uncontrollable movements, and even dementia in very young kids.
We are now in an urgent race against the clock to help save our daughter’s life and prevent further deterioration of her mental and physical capacities while we desperately search for a cure.
We are parents advocating for change, discovery, and treatment for our hilarious, kind, and extraordinary Frances so that no other family has to endure what we are facing.
Your support will help us fund research and development of breakthrough therapies that will lead to life-saving treatments for Frances and the 150M kids around the world living with rare diseases.
90% of rare diseases, including Frances’, are without an FDA approved treatment. This means that even with great healthcare plans, there’s no actual treatment protocol for insurance to cover.
It’s up to parents & families to seek out and independently fund research and development of treatments, medicines, and therapies they hope will save their kids’ lives. Because time is of the essence, multiple research paths must be explored in parallel at enormous expense. We have begun funding a multi-phase drug repurposing study in partnership with another DHDDS family. We are investing in stem cell, brain organoid, and ASO therapy (RNA) research. We will also be building a DHDDS disease model and biorepository of Frances’ blood and tissue samples that can be shipped to labs around the world as we find and fund promising new studies.
While the need to fund translational research is urgent and fully tax deductible through our partnership with Rare Village Foundation, Frances' hospital bills are not covered under this partnership and are projected at more than $250,000/year. If you would like to help offset the cost of Frances' hospital stays specifically, please visit our GoFundMe page. Please note donations to GoFundMe are not tax deductible.
Visit the Portugal. The Man shop for official Frances approved merch. 100% of proceeds will go towards Frances’ medical treatments & research to overcome DHDDS and other rare neurodegenerative diseases.
