Lisa May Have Lost Her Own Battle with ALS but Won A Battle for ALS Patients

A heartbreaking announcement in PR Week stated that Lisa Stockman Mauriello had died of ALS in her New Jersey home at age 52 on August 4, 2021. As stated, the cause of death was amyotrophic lateral sclerosis (ALS). Lisa passed away surrounded by her loving family.

Lisa was diagnosed with an aggressive type of ALS in January 2021. She attempted to enroll in a clinical trial sponsored by Biogen investigating its drug Tofersen. The drug had been developed to slow the progression of Lisa’s form of ALS.

Request Denied

Biogen responded that its compassionate use program allows access to the treatment only after the completion of its clinical trials. During this period, Lisa received overwhelming online support from people who also petitioned Biogen.

Biogen eventually acknowledged the urgency and opened its early access program in mid-July to patients experiencing rapid ALS progression.

In spite of her deteriorating health, Lisa managed to continue working at establishing a communications program for healthcare at the Chapel Hill School of Journalism.

A Lifetime of Healthcare PR

Lisa began working at the Ruder Finn Company in 1991, followed by a move to the Burson-Marsteller Agency (BCW) in a more senior position. Officials at BCW founded the Chandler Chicco Agency and hired Lisa as its first employee to focus on PR in healthcare.

In June 2014 Lisa joined Syneos Health and became its medical communications and public relations president, eventually becoming their communications services president.

A statement was issued by Syneos after Lisa’s death offering their condolences and vowing to continue Lisa’s work in the North Carolina certificate program due to be launched in the second quarter of 2022.

Lisa’s husband, Bob Mauriello, told PR Week that Lisa found healthcare fulfilling. He explained that she felt it was meaningful and affected patient outcome, advocacy, and treatment awareness. Working with healthcare PR was very special to Lisa as she believed it created an impact on people’s lives.

The Financial Impact

The outpouring of support brought donations of $750,000 in pledges and cash with a $1 million goal. Lisa and her husband donated $100,000 which is being matched with almost $200,000 from an anonymous donor.

Lisa’s Impact

Lisa became one of fifty people named by CNN as “most powerful” in healthcare. In 2005 she was selected as a Rising star in the Businesswomen’s Association among many other designations.

Lisa’s mother, Maryanne Stockman, predeceased her. Lisa is survived by her husband Bob Mauriello and sons Scott, Luke, and Dean. Lisa is also survived by her father, Dennis Stockman, and a sister, Julie Stockman.

Note to our Readers: You may find the following four articles about Lisa and Biogen by searching our Patient Worthy pages:

 Lisa Received Her Long-Awaited ALS Treatment, but Is It Too Late?

 Thousands of People Have Joined Lisa in Her Appeal to Biogen Asking for Access to ALS Drug

  ALS Patient Pleads With Biogen for the Chance to Extend Her Life Through Tofersen

 Is There a Right or Wrong in the Debate Between Patients and Manufacturers to Release Drugs Through Compassionate Use?

Rose Duesterwald

Rose Duesterwald

Rose became acquainted with Patient Worthy after her husband was diagnosed with Acute Myeloid Leukemia four years ago. He was treated with a methylating agent While he was being treated with a hypomethylating agent, Rose researched investigational drugs being developed to treat relapsed/refractory AML.

Share this post

Share on facebook
Share on google
Share on twitter
Share on linkedin
Share on pinterest
Share on print
Share on email