Gerald “Jerry” Matczak, lead consultant in clinical innovation at Eli Lilly & Co., was a rare breed in the pharmaceutical world, someone who not only embraced social media, but also listened to activist patients.

Matczak died suddenly on Thursday at age 54. The cause of death was not immediately known.

“He didn’t show up to a meeting yesterday,” said Cathy Collett, an Indianapolis resident who advocates for patients with amyotrophic lateral sclerosis (ALS). “It was definitely unexpected and sudden.”

According to his LinkedIn profile, Matczak was community manager in the Clinical Open Innovation group at Eli Lilly from 2011 to 2015 before being named a consultant in clinical innovation for the pharma giant.

Collett called Matczak a “wonderful liaison for the pharmaceutical industry” to patients, particularly those with rare and untreatable diseases. “Jerry understood the urgency,” she said.

It apparently was personal for him. Matczak had spoken about how one of his brothers died in the early days of the AIDS crisis in the 1980s, before the advent of drugs that have turned HIV into a manageable condition rather than a death sentence.

“He reached out to patients [to get] input from them about what they needed from clinical trials,” Collette said. “He had a gift for social media,” she added.

Matczak was a frequent contributor to LillyPad, a consumer-focused Lilly blog on drug discovery, patient engagement and living with various health conditions. He also was a regular participant in industry events that embraced empowered patients, including Stanford Medicine X.

Matczak was a member of artist-patient advocate Regina Holliday’s Walking Gallery of Healthcare. Of the more than 400 Walking Gallery participants — many with serious illnesses — he is just the second to die, after Jess Jacobs last summer.

Here is a photo of the jacket Holliday painted for Matczak.

@ReginaHolliday @gmatczak pic.twitter.com/pvfgZN0sxx

— ALS Advocacy (@alsadvocacy) February 3, 2017

Holliday said that Matczak participated in all three Cinderblocks retreats — what she has called “Burning Man meets healthcare” — that she has held to date and was helping with planning for the fourth. The first one came about in 2012 when the federal government’s Partnership for Patients neglected to invite actual patients to an event.

“Jerry came out for this with some of his Lilly colleagues,” Holliday recalled. “These were some very in-your-face patient advocacy people. They listened.”

Later, Matczak invited Holliday to speak at a Lilly conference. It was not the first time she addressed a pharma company, but unlike those other times, Holliday stayed and participated in sessions following her presentation, for one good reason.

“I won’t sign non-disclosure agreements,” Holliday said. “Lilly never, ever asked me to sign a non-disclosure.” That is rare in the pharma industry, though she did say Novartis also let her stay and listen to what company officials had to say.

“Most big pharma companies are scared of patient activists,” Holliday said. But Matczak made sure Lilly was not, and Holliday expects that to continue.

“The spirit of Jerry will live on,” she said. “He was a very dear friend. He was always good.”

Collett agreed with that assessment. “He was a gentleman and a gentle man,” the ALS advocate said.

According to the Indianapolis Star, Matczak is survived by his “longtime companion” Nancy J. Miller, his mother Donna Matczak and sister Sharon Staunton. Funeral services will be held at Matthews Mortuary, in Brownsburg, Indiana, on Tuesday, Feb. 7 at 10 a.m. Eastern.

The Twitter account for Lilly’s clinical trials operation honored Matczak with a “day of silence” Friday.

We are observing a day of silence in memorial for our dear friend and colleague Jerry Matczak.

— Lilly Trials (@LillyTrials) February 3, 2017

Photo: Stanford Medicine X