RIP Jenny Knauss, Lifelong Activist for Patients,
Women’s Health, and Alzheimer’s Spoken Here

Before many of us heard the expression “patient-centered care,” Jenny Knauss was out front on the issue in the US, the UK, and in Africa. Ever the radical, she was a tireless advocate for reproductive rights, women’s health, and improving the health and welfare of the “disenfranchised.” Jenny Knauss died on June 11th, from Alzheimer’s disease at Catonsville Commons Nursing Home in Catonsville MD, at 75.

Jenny’s determination was multifaceted, but first, I’d like to underscore her decision to use her last years as an advocate for Alzheimer’s patients. She testified before Congress¬† and worked with University of Illinois gerontology researchers.

Engaging Patients with Alzheimer’s Like Her, Policymakers, and Doctors

In 2002, Jenny was diagnosed with Alzheimer’s in Chicago. She quickly educated herself and those around her about it. But as with all matters pertaining to public health, she was thinking about grassroots activities that could engage patients, their families, doctors, and policymakers in moving forward with Alzheimer’s in a radical way, and not so much about her own private saga.¬† By the end of 2002, Jenny founded Alzheimer’s Spoken Here in Chicago with her second husband Don Moyer. In 2004, Jenny became the first person with Alzheimer’s to address a plenary session at the Alzheimer’s Association Annual Meeting. In the fall of 2005, Jenny and her husband spearheaded a nationwide petition to get the Alzheimer’s Association to include patients diagnosed with Alzheimer’s in the planning process. In 2006, the Alzheimer’s Association formed an Early Stage Advisory Group and Jenny joined this first group.

I knew Jenny well in the 1970s in Chicago, where she was involved with the founding and proliferation of the Chicago Women’s Liberation Union, a key advocacy group for women. Jenny was active in the fight to legalize abortion, provide access to essential reproductive health services, and she tirelessly pressed for equal healthcare access for all. Teaching and mentoring were also a central part of her life.

Her last fulltime job was with the Illinois Caucus on Teenage Pregnancy (subsequently renamed the Illinois Caucus on Adolescent Health or ICAH). Jenny founded the nonprofit in 1982. The Caucus had reach far beyond its catchment area and Jenny is to be credited with helping pregnant teens articulate who they are, not leaving it to outsiders.

“She moved so many to act in order to change the world for the better,” said Heather Booth. “She lived a life of commitment, consistent as one can be in her personal life and her values and belief.”

Born in Melbourne UK,  a village near Cambridge UK, Jenny was homeschooled by her mom. She graduated from Somerville College, Oxford, with a PhD in West African History, and worked at the Nigerian Institute for Social and Economic Research at the University of Ibadan, Nigeria.

Jenny’s husband, Don Moyer, of Chicago, survives her, as well as her two children, her son, Orlando, and daughter, Olivia, from a previous marriage to Peter Knauss. Her first husband, Peter Knauss, predeceased her.

Photo credit: Don Moyer