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 I previously founded/co-founded several big data companies prior to founding BrainSpa.  The first was Health Market Science, Inc. (founded in 1999 in King of Prussia, PA) and acquired by LexisNexis Health in 2014.  The second was Aileron Solutions, LLC (co-founded in 2009 in Conshohocken, PA) and acquired by IMS Health in 2014.

 

I was running Health Market Science as a successful business back in 2006, when my youngest child Luke was born with an unexpected chromosomal abnormality, known as Prader Willi Syndrome (or PWS).  PWS is a neurodevelopmental disorder with a significant neuroendocrine component that leaves Luke susceptible to Alzheimer’s pathology early in life.  It turns out that PWS is a human model for sporadic Alzheimer's pathology as Down's syndrome is a human model for familial Alzheimer's pathology.

 

If my son's susceptibility to sporadic Alzheimer's wasn't horrible enough, the same week Luke was born, my father Joseph was diagnosed with sporadic Alzheimer’s disease at the relatively young age of 70.

 

During my father's initial visit to one of the 29 NIA funded Alzheimer's Disease Centers, a research nurse asked us to donate his brain. Bear in mind that this was our first interaction with the center. It became immediately clear to me that the best modern medicine of the day had nothing to offer my father in the form of a disease modifying approach.   

 

I decided then that if Luke had special needs, then he needed a special parent. If Joseph had special needs, then he would need a special son. That was what I needed to be but to help Luke avoid Alzheimer's pathology and to help my father have a slow progression, I would need to immerse myself into the science and become informed. What I learned confirmed my initial impressions about the state of prevention/treatment for dementia.  I then had two options: I could accept fate, wait for the inevitable and donate their brains. Or, I could develop other options for prevention/treatment. 

 

As I further immersed myself into Alzheimer's research, my ignorance became my objectivity.  Where other's saw that there was not a cure...I found plenty of evidence that pointed to risk mitigation and small incremental steps to living a brain healthy lifestyle in the hopes of decreasing the incidence, delaying the onset or slowing the progression.  

 

Since those initial dark says my son has progressed well.  He does not have the typical PWS issues.  He has plenty of challenges but we have avoided an increased susceptibility for sporadic Alzheimer's pathology by avoiding insulin resistance and diabetes.  My father also had a very atypical progression for the first 7 years after his initial diagnosis.  Then he fell and had a horrific end of life.  He died in late 2013 at age 79. 

 

Joseph's death caused me to focus on my own significant risks for Alzheimer's disease. Evidence shows that his diagnosis increases my risk.  But more importantly, I had significant medical risks created mostly by an unhealthy lifestyle. I synthesized the research into digestible understanding of my own risks for dementia, what risks were controllable and strategies for modifying my controllable risks.  I got genetically tested.  I also got baseline measures in order to run my own N=1 trial.  Then I undertook a significant lifestyle risk mitigation program. I lost 55 pounds and along with that my diagnoses of hypertension, systemic inflammation, insulin resistance and dyslipidemia and obesity.

 

Ultimately, BrainSpa is a culmination of my journey.  How can we practically manage risk of dementia throughout our lifespan?  First we have to assess risks and make them understandable, meaningful and actionable.  This includes genetic testing, lab testing and using a survey instrument to collect personal, medical and family histories in order to estimate risks. Then we have to provide real tools in order to help those at increased risk modify their controllable risks by living a lifestyle that is compatible with their molecular makeup.  

 

I welcome you to review BrainSpa's approach.   

 

Thank you.

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