KGI Student Wins Federal Grant to Study Rare Insomnia Disorder

KGI Student Wins Federal Grant to Study Rare Insomnia Disorder

Imagine spending months deprived of sleep or dreams, paralyzed by an exhausted body but an active mind. Sleeping pills and barbiturates only speed up the decline.

Those diagnosed with Fatal Familial Insomnia (FFI), a rare genetic sleep disorder, suffer from hallucinations, delirium and a dementia-like confusion during the average 18 months from diagnosis to death. The mercilessly degenerative disease has no cure.  

Kate Brown, who is enrolled in KGI's Postbaccalaureate Premedical Certificate (PPC) program, recently won a $10,000 grant from the Social Security Administration to help fast-track disability benefits to FFI patients.   

Brown was among nine students and the only representative from KGI selected in a national competition, The Disability Determination Process Small Grant Program, directed by New York-based nonprofit Policy Research, Inc. In its inaugural year, the program awards year-long stipends to graduate students to improve the complex determination process for disability benefits. Other student projects involved streamlining disability access for the homeless and veteran populations.

Brown, who is applying to medical school, will be studying three diseases - FFI, and two additional disease as designated by the SSA.    

While awaiting approval from the Social Security Administration to study the other two diseases, Brown will begin reviewing the existing literature on FFI, interviewing doctors and researchers, and surveying patients and their caregivers about their experiences. In February, she will submit a paper to the Social Security Administration outlining whether FFI should join more than 100 diseases on the Compassionate Allowances List, which provides for expedited disability benefits.        

FFI "is an extremely awful disease to get," noted Brown, who became familiar with the disorder after listening to an audiobook of D.T. Max's "The Family that Couldn't Sleep." "Mentally, you're aware of what is happening but you have no control over it."

FFI, a prion disease of the brain, has been discovered in fewer than 50 families worldwide. A parent with the disease has a 50 percent chance of passing it on to his or her child.

After graduating last year with a liberal arts degree from California State University San Marcos, Brown volunteered with Planned Parenthood of the Pacific Southwest and eventually secured part-time employment as a medical assistant.    

She gained exposure to research in rare diseases during an independent study last semester with Norris Professor of Applied Life Sciences Ian Phillips. The group looked at the process of getting FDA approval for an orphan drug to treat Behcet's disease, a rare disorder that causes chronic inflammation in the blood vessels. Phillips, director of the Center for Rare Disease Therapies, encouraged Brown to apply for the grant and is serving as her faculty advisor. Professors Joel West and Timothy Cote assisted with the application.

"When I first made students aware of this opportunity, Kate was immediately interested and was willing to spend her Christmas vacation writing the proposal," recalled Phillips. "This grant is a testament to the Center for Rare Disease Therapies at KGI, which raises awareness of rare diseases."

Brown, who hopes to enroll in KGI's planned Master of Science program to extend her studies, praised the school for its innovative, hands-on learning environment.

"We focus on a science-based approach and apply it to different realms to make a positive difference in the real-world marketplace," she said.