ALSP

March is ALSP awareness month. 

In 2019, Kim's youngest brother, Jeff, was diagnosed with Multiple Sclerosis (MS) after experiencing a fall, inability to speak, and gait issues. This diagnosis span over the course of two years while his health continued to deteriorate quickly. In 2021, doctors decided to do a genetic test on Jeff which detected a rare mutation to the CSF1R gene. This mutation changed the diagnosis of Jeff’s disease from MS to Adult-onset leukoencephalopathy with axonal spheroids and pigmented glia (ALSP). 

ALSP is a neurological condition characterized by changes to certain areas of the brain. It is a terminal brain disorder. Affected individuals may develop memory loss, loss of executive function, and impaired skills such as impulse control, self-monitoring, and focusing attention appropriately. Some people with ALSP have mild seizures, usually only when the condition begins. As ALSP progresses, it causes a severe decline in thinking and reasoning abilities (dementia). 

In recent years, doctors familiar with the disease have found that patients have been misdiagnosed as ALSP looks like other diseases (MS, ALS, Dementia). Currently, there is no cure and no FDA approved treatments. 

Kim's middle brother was recently diagnosed with ALSP, which we now know was inherited from the paternal side. Kim, too, has the gene mutation, but currently without symptoms. Watching both of her brothers have their worlds shattered at the prime of their lives has launched a mission for Kim - she's hopes to help turn this disease from terminal to chronic, and ultimately find a cure. 

Kim is a Board Member of the Sisters’ Hope Foundation, representing those with ALSP in California, and consistently seeking ways to raise many and awareness. She has reached out to Oprah Winfrey and her organization. While her organization understands there are thousands of diseases in this world, they would like to put ALSP on the map, alongside other illnesses like cancer, MS, ALS, dementia, etc.

Here are links to videos about ALSP and Kim's family.