Jon Ferraiolo, tech entrepreneur, dies after battling Lou Gehrig’s disease

Silicon Valley engineer, entrepreneur and author Jon Ferraiolo died on July 16 after a seven-year battle with amyotrophic lateral sclerosis (ALS), commonly known as Lou Gehrig’s disease. His journey with ALS was the subject of a Palo Alto Weekly cover story, “ A vibrant life,” published on July 27, 2018, and an accompanying video. The longtime Palo Alto resident was 67 years old.

Born Jonathan Ferraiolo in suburban Chicago on Jan. 26, 1954, he was the third of four children of Frank Charles, a physician, and Ruby Barbara Ferraiolo, a housewife. In elementary school in Des Plaines, Illinois, he had a penchant for eating the same foods for weeks and months at a time. He excelled in track and field. Later, he became the de facto football coach in eighth grade after the coach found he couldn’t honor his obligations, Ferraiolo wrote in his memoir, “Kinda Ugly: How I Triumphed Over a Fatal ALS Diagnosis (and an Oversized Nose).” He had a gift for writing winning football and basketball plays for his teams, going beyond the league’s rulebook.

A self-described cerebral “Spock” from the television series Star Trek, Ferraiolo also had a Puckish sense of humor that sometimes got him in trouble. Once, he couldn’t resist kicking his mother in the backside when she bent over, exposing her derriere, he said in his memoir.

He could also use humor to charm even the most formidable teacher. As an adult, his sense of humor became a gift to his family and sustained him throughout his diagnosis and progressively worsening illness, his wife of 47 years, Karen Kang, said.

At Maine West High School in Illinois, Ferraiolo played on the school’s tennis team. He excelled as a student and maintained a top grade average, taking multiple accelerated classes. Chemistry was his favorite. He was obsessed with achieving all As in the highest-level courses, according to his memoir.

Ferraiolo attended Stanford University starting in 1972. He graduated in 1976 with a Bachelor of Science degree in mathematical sciences. Although he had a low draft number — 20 — he avoided being inducted during the Vietnam War after President Richard Nixon changed the draft to an all-volunteer military.

He spent one quarter of his sophomore year studying in Tours, France, where he met his future wife, Kang. Ferraiolo planned to hitchhike around France during a two-week break; Kang had little money after a postal strike held up her check. At the suggestion of a friend, they paired up to hitchhike together. Ferraiolo was game to the idea in part because he thought an attractive American girl would help get rides, he said during his interview with the Weekly.

Jon Ferraiolo has seen a linear decline in his motor neuron functioning since he was diagnosed with ALS (also known as Lou Gehrig’s disease) in 2014, but the Palo Alto resident and his wife, Karen Kang, have decided to transcend the disease as best they can.

It didn’t take long for them to become more than acquaintances. After three days of hitchhiking, on her 20th birthday, Ferraiolo admitted his love. They marked that day as their beginning as a couple.

Ferraiolo decided to extend his stay in France, taking a job as a teacher in Cannes at the International Riviera School. After a year, he returned to Chicago and worked in the Department of Defense contract office during the summer.

When he returned to Stanford, he reunited with Kang, a Mills College student, who had broken off their romance while they were still in France. He approached their renewed relationship with a more positive world view. They soon married and had three daughters.

Ferraiolo also obtained a master’s degree in business administration in 1983 from Santa Clara University Leavey School of Business. In Silicon Valley, he had a distinguished career in software engineering. He was director of engineering at Cimlinc Inc. in Menlo Park from 1986 through 1990.

As founder and developer at Solstis Development Corporation in Palo Alto, a software and consulting services company, he focused on engineering change management from 1990 to 1992.

He spent more than 13 years at Adobe Systems in San Jose as an architect, engineering director, engineering manager and senior engineer. He joined the Advanced Technology Group as a senior engineer, where he was one of the driving forces behind the W3C standard Scalable Vector Graphics (SVG). He was sole editor of the SVG 1.0 specification and architect for SVG-related product efforts. Ferraiolo served as engineering director for Photoshop Album. He was on the PDF language review board; an XML version of PDF and served as original editor of the ePub 1.0 standard, according to his LinkedIn profile.

Ferraiolo was a distinguished engineer at IBM from 2006 to 2014. He was part of emerging technologies in IBM’s software group. He was managing director of Open Ajax Alliance, an industry consortium of companies and individuals devoted to promoting open Web technologies. He also served as software architect, engineering manager and product manager on Adobe products such as Illustrator, Acrobat and Premiere. He became known for developing the Precision Graphics Markup Language, the original Scalable Vector Graphics language specification (a standard for the nonblurry text and graphics), and as a major contributor to the EPUB standard for digital books.

Ferraiolo was diagnosed with ALS in July 2014, a neurodegenerative disease. Throughout his illness, he kept his sense of humor, often buoying his family, Kang said. He continued to find ways to thrive, writing books and staying engaged with the tech community by using assistive technologies such as eye-gaze, which allowed him to work on his computer. He wrote his memoir and his first book, “Holy War for True Democracy,” using only his eyes.

He was also active in the ALS community helping others to understand and navigate their diagnosis. Throughout their marriage, family was the most important thing from which he derived the most pleasure, Kang said. He doted on her, their three daughters and their husbands and two grandchildren.

Ferraiolo also had great insight into his illness, Kang said.

People will go through certain stages of their illness: denial, fear, anger, acceptance, she noted.

“He just leap-frogged all that stuff. He never got angry; he never dwelled on that. That was the secret to his happiness and satisfaction with his life,” Kang said.

Ferraiolo cheerfully added to that assessment in his 2018 interview.

“My joke about ALS is: Surrender your pride and dignity. After that it’s pretty easy,” he said.

The couple moved to Encinitas two years ago to live with a daughter but retained their Palo Alto home. Ferraiolo died peacefully at home surrounded by his family. After multiple bouts of pneumonia, he decided to forgo further continued life support, Kang said.

‘My joke about ALS is: Surrender your pride and dignity. After that it’s pretty easy.’

Jon Ferraiolo, tech entrepreneur

He is survived by his immediate family: wife, Karen Kang; daughters Nicole Ferraiolo (husband Taunton Paine); Natalie Ferraiolo (Paul Manning); Allison Ferraiolo (Nicholas Calonne); two grandchildren, Theo and Grafton; his devoted dog, Pepe. He is also survived by sisters Bobbe Ferraiolo of Napa and Robin Lenna of Florida and his stepmother, Karen Ferraiolo of Des Plaines, Illinois.

He was predeceased by his mother, Ruby Barbara Ferraiolo, his father, Frank Ferraiolo, brother, Scott Ferraiolo and half-sister Andrea Steffens.

A celebration of his life will take place Aug. 27 at 5 p.m., Lucie Stern Community Center, outdoor patio near the community room, 1305 Middlefield Road, Palo Alto.

In accordance with Palo Alto COVID-19 restrictions, all unvaccinated persons 3 years and older are required to wear a face mask except when eating or drinking at the event. Vaccinated persons can go maskless.

If desired, gifts can be made to Ferraiolo’s memorial page at the ALS Association, donate.als.org/jonferraiolo.