Went to 12 different schools in 12 years in 2 foreign countries and 3 states. Educated in the US Navy as an Electronics Technician (USS Edward McDonnell DE-1043) and as a Reactor Operator (qualified aboard a nuclear powered submarine, USS Kamehameha SSBN-642), later a BS in Physics, Phi Beta Kappa, and an MBA.

 

Worked as a plant operator at coal and nuclear power plants. Then a career in Silicon Valley, ending as VP of Quality & Reliability at two different startups (both still operating, although now owned by large companies). Since these were start-ups, tasks also included facets of sales, marketing, operations (product engineering), and design/development.

 

Published numerous articles on Quality (mostly on SPC and SQC) and Reliability (mostly on stress methods for nonvolatile memories). Contributed to two IEEE books on nonvolatile memory device physics, also an IEEE paper about radiation and floating-gate memories. Published articles on our renewable energy systems (photovoltaic, wind, solar thermal) in Home Power magazine and contributed to other articles, e.g., on troubleshooting and preventive maintenance. Co-holder of one US patent for a nonvolatile memory product. Numerous letters-to-editor have been published in a wide variety of magazines, including MDA Quest, ASES Solar Today, Naval Institute Proceedings and Naval History, Science News, and Scientific American.

 

Chaired the JEDEC JC-13 committee on Government-Industry liaison (DOD, NASA) for writing standards for solid state devices. Still volunteer with the JEDEC JC-10 committee to write definitions for solid state devices and sometimes contribute to writing test methods for integrated circuits. JEDEC is the worldwide standard setting organization for solid state devices. I have been the Managing Editor of the Journal of the Oughtred Society for six years.

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Retired from Silicon Valley in 1999 to spend time traveling and doing “fun” projects, which include renewable energy, model trains, refurbishing our homestead, and reading. Now that traveling has stopped (my mutation, see www.ibmpfd.com) have been collecting various gadgets, including board war games, slide rules, slide charts, measuring, and drawing instruments. Web site about our location is www.quadd.info, which contains partial lists of some collections.

 

Very happily married, especially because have no children (and have an autosomal dominant mutation). Spent several years raising 2 brothers and a sister (i.e., both parents gone), so not unfamiliar with issues of parenting

 

Current hobbies include reading (I have over 25,000 books), collecting slide rules (I have more than 500), model trains (I have had Märklin HO for over 60 years), playing board war games (I have more than 500 from Avalon-Hill and SPI), and maintaining our property. I did chair the county’s land advisory committee for several years, while we wrote the count Master Plan and Public Lands Use Plan.

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I had always been physically active, e.g., enjoyed playing sports, even if not particularly good. I first identified a noticeable degradation in my late 20’s. My mother had arthritis and I had required numerous waivers, including for arthritis, to join the Navy when I was 20.

 

By my early 30’s, I had told my doctor there was something wrong. Playing league basketball clearly showed a degradation compared with others at the same or older ages. The doctor suspected that my extensive business traveling or my long work hours or that I was an adult child of an alcoholic contributed. After several years, the doctor suggested I contact a neurologist. The neurologist found no medical indicators, in fact he thought I was in better “shape” than most my age.

 

Around age 40, my aunt (my mother’s sister, my mother deceased from a car accident when I was 24) got me to enroll in the Human Genome Project at Duke University. Over the next 15 years, I made several trips to Duke, including a variety of tests (the EMGs were especially painful). Duke suggested that FSH or Limb-girdle were possibilities, but DNA testing could not verify any of the known mutations for those diseases.

 

In late 1995, the neurologist confirmed that something genetic was wrong through Cpk (blood tests for muscle performance). The good news was that neither MS or ALS were indicated.

 

In 1996, I met with my aunt’s son for the 1st time in 30 years. He was clearly affected by the same disease as his mother, so the possibility of a family mutation became viable. In 2002, I had a biopsy at the U. of Rochester, NY to further investigate the possibility of FSH. Between 1996 and 2002, I had gone to UC Davis with my cousin to try and determine a common source for our problems.

 

In 2004, at the suggestion of my cousin (instigated at UC Davis and with the biopsy report from U. of Rochester), I met with Dr. Virginia Kimonis and Dr. Giles Watt at the Harvard Medical Center. They confirmed I had the recently found mutation in the VCP gene. We are family 15 in the initial report announcing the discovery.

 

Since then, I have participated in ongoing research with Dr. Kimonis at UC Irvine, Dr. Chris Weihl at Washington University St. Louis, Dr. Charles Smith at U. of Kentucky (for dementia, which I do not have), and Dr. Michael Benatar, U. of Miami, to see if any connection with ALS.

 

Although some of my siblings have or had Paget Disease, I do not. None of our family have the dementia. Both of my younger sisters, as well as my cousin, died at age 65 from other causes (respiratory, heart) that are complicated or exacerbated by the mutation.

 

More than 10 years ago, Dr. Kimonis asked me to prepare and maintain a web site. The web site, www.ibmpfd.com, gets 10-20 visits per week and has helped a number of people identify or find out about the VCP mutations causing IBMPFD. The web site contains numerous suggestions for life style improvements that may extend and better one’s life, as well as suggestions for assistive equipment for caregivers to help those affected continue to be productive. I am now 70 (well above the typical age of death for those with IBMPPFD), suggesting that life style improvements will slow some of the natural degeneration from the mutation.