While fighting ALS, Lisa Stockman Mauriello advocates for UNC health comms program

Family, friends and colleagues are rallying to help Stockman Mauriello reach her goals.

Lisa Stockman Mauriello’s family, friends and colleagues have formed Team Lisa.
Lisa Stockman Mauriello’s family, friends and colleagues have formed Team Lisa.

CHAPEL HILL, NC: Even after being diagnosed with ALS, Lisa Stockman Mauriello is still working to establish a healthcare communications program at the University of North Carolina at Chapel Hill’s Hussman School of Journalism and Media.

Stockman Mauriello received her own B.A. and M.A. at the university.

The school plans to launch the certificate program for undergrads in the spring of 2022. It consists of three three-credit hour courses: Healthcare Marketing and Communications; Communicating for Behavior Change; and Health Communication Capstone.

“[Stockman Mauriello] is the visionary for this program, identifying the knowledge and training students need and how that aligns with the three-course curriculum,” said Heidi Hennink-Kaminski, senior associate dean for graduate studies at Hussman.

Stockman Mauriello collaborated with experts from The John Hopkins Hospital, Syneos Health and Hussman in designing the courses.

“[Stockman Mauriello] is passionate about meaningful work that transforms people’s lives,” Hennink-Kaminski added. “Throughout her career and her leadership, her work has resulted in helping many to lead better and healthier lives.”

To support the program, Stockman Mauriello and her husband Bob Mauriello have donated $100,000 and an anonymous donor has matched that amount as a challenge grant; so every dollar donated, up to $200,000, will be matched, according to Stockman Mauriello’s friend and former colleague, Diane Hoey.

For the last seven years, Stockman Mauriello worked at Syneos, most recently as the president of diversified communications services. She was elected to PRWeek’s Hall of Femme 2021.

Team Lisa
While Stockman Mauriello is advocating for creating the educational program, she is also fighting a very personal battle.

In January, Stockman Mauriello was diagnosed with bulbar ALS. It is particularly aggressive in causing physical decline. Through her treating physician, Stockman Mauriello learned that Biogen was performing clinical trials of the drug Tofersen designed to treat the type of ALS she has.

Too late to be included with the trial group, Stockman Mauriello sought access to Tofersen through Biogen’s compassionate use program that would allow for investigational treatment, after the clinical trials were completed. The company has denied allowing Stockman Mauriello access to the medication.

The Today show reported that Biogen provided a statement. In part, it explained that they did not believe it was fair to have study participants on the placebo, while other patients are offered access to Tofersen.

Stockman Mauriello has also requested access through the 2018 Right to Try bill, under which patients who cannot be in clinical trials can request experimental drugs.

Stockman Mauriello and her husband also explained the situation in a Medical, Marketing and Media podcast interview in April.

Stockman Mauriello’s family, friends and colleagues have formed Team Lisa. The group of about 35 people is advocating for Stockman Mauriello and her goals. Supporters can donate to Stockman Mauriello’s legacy healthcomms program; sign her petition for access to Biogen’s Tofersen and join various social media campaigns on Twitter, Facebook and LinkedIn.

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