Gail and Harry Koujaian are parents to Alec (20) and Hayley (19). Hayley was diagnosed with Niemann Pick Type C (NPC), an ultra rare Neurodegenerative disease that affects approximately 1 out of 100,000 children. It is a neurodegenerative disease that affects all organs in the body but has a profound affect on the brain. It is sometimes referred to Childhood Alzheimer’s because of the similarity between the two conditions. Kids lose the ability to talk, walk and swallow. Dementia is common. There is no cure for NPC although there are promising drugs currently in clinical trials.

Through the Compassionate Use Program, Hayley receives a drug called cyclodextrin that has shown efficacy in mice and cats. Every 2 weeks, Hayley travels to Rush University Hospital to receive the drug via a Lumbar Puncture. December of 2018 will be the 5th year Hayley has been receiving this drug.

The Koujaian’s spend a lot of time conducting fundraisers to raise desperately needed money for research in NPC. They are members of the Support Of Accelerated Research (SOAR) organization which consists of families and researchers collaborating to rapidly advance promising therapies to the clinic. More information can be found here.

The Koujaian family was recently featured in a documentary on CNN Headline News titled “Something is Killing Me: What’s Wrong with the Twins?"