Program Seeks Donations In Honor Of Terminally Ill Summit Mom

SUMMIT, NJ — Things changed fast in a year for Summit mom Lisa Stockman-Mauriello, 51. After she started showing symptoms of a terminal illness last summer, friends rallied around the mother of three boys to get her experimental treatment for ALS (Lou Gehrig's Disease). Stockman-Mauriello's case spurred national news coverage and stirred debates about who gets access to experimental drugs and trials.

Meanwhile, Stockman-Mauriello's health continues to decline. But she is still active, through friends and loved ones, in helping others.

"Lisa had to step down from her very successful 30-year career in healthcare communications due to ALS in March," said a friend this month. "Before Lisa was diagnosed, and still now, she is partnering with her alma mater, UNC-Chapel Hill to develop a health communications program. The certificate program will educate and equip the next generation of healthcare communicators."

Organizers of the program are seeking donations, urging donors to select “Legacy for Lisa” in the drop-down menu on this online giving page.

You can read more about the program here: http://hussman.unc.edu/news/le...

"Lisa has always been dedicated to the development and mentoring of her teammates," said the friend. "So it’s fitting that she has a hand in developing the next generations of health communicators and that this will be part of her legacy."

Experimental Treatments And Lisa's Case

A Salon writer asked last month, in a piece largely about Stockman-Mauriello's case, "Are we trying to 'warp speed' treatments that aren't ready?"

Stockman-Mauriello's nightmare began last summer when she found it more difficult to talk. It took her until this past March to get the right diagnosis: a rapidly progressing case of amyotrophic lateral sclerosis. People diagnosed with the neuromuscular disorder rarely live beyond five years, but Stockman-Mauriello's type is even more aggressive.

Stockman-Mauriello's husband told the Raleigh News & Observer in spring that his wife noticed a hoarseness in her voice last August, then later had difficulty breathing. Within months, he was feeding her four times a day through a tube.

"Every week, I am rapidly declining from bulbar ALS," Stockman-Mauriello explained, "which is caused by a mutation to my SOD1 gene. A pharmaceutical company, Biogen, has a late-stage medicine called Tofersen, designed to treat people with this mutation. Unfortunately, they have denied my request, through my physician, to gain access for reasons that have not been explained."

She was hoping to live long enough to see more milestones in her sons' lives.

"The Summit Community has been so supportive of Lisa and the Mauriello family," said a friend.

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