My Sisters, Their Strength, and Our Family’s Journey with ALS

In honor of Women’s History Month and through Target ALS, I want to pay tribute to my three sisters: Anne, Jan, and Lora, whose strength and dedication have left a lasting mark on the fight against ALS. Their journeys, shaped by our family’s experience with this devastating disease, are stories of resilience, advocacy, and hope.

Our father, Charles Pollari, passed away from ALS in January 1989, just six months after his diagnosis. At that time, we didn’t realize ALS was a familial, genetic disease that would continue to affect our immediate family, and also affect uncles, aunts, and cousins within the greater family tree.

The connection became clear in 2003, when my oldest sister Anne, at age 52, was diagnosed with ALS. Anne’s courage propelled her to become a tireless advocate, traveling to Washington, D.C., in her wheelchair to champion earlier access to Social Security, Medicare, and increased research funding. She found community in the local ALS support group, where she freely shared advice and encouragement. Anne’s leadership was evident as she organized a ‘Share the Care’ group that rallied volunteer caregivers who helped with daily needs and brought comfort to her life and family at home.

After three brave years, Anne passed away in 2006 at the age of 55. Her final act of generosity was donating her body to the University of Minnesota, advancing ALS research, and offering hope to others.

Our family’s struggle continued: in 2010, my brother Kevin was diagnosed with ALS at age 48. As Kevin fought the disease, Jan, my next eldest sister, began experiencing memory loss and confusion and was ultimately diagnosed with Frontal Temporal Dementia. Both Kevin and Jan tested positive for the C9orf72 gene repeat expansion—a mutation discovered after Anne’s passing. We believe Anne’s body donation and our family’s participation in research helped identify this genetic defect. Jan died in December 2016 at age 59, and Kevin followed five months later at age 55.

In 2017, Lora, my youngest sister, pursued genetic testing, determined to contribute to ALS research. Though confident she was not a carrier, results confirmed she possessed the C9orf72 gene. Since then, Lora has become deeply involved in clinical studies for preFALS, ALL FTD, and Target ALS. She’s a passionate advocate, working with the ALS Association, I AM ALS, ALS TDI, and End the Legacy. Her commitment led her to Capitol Hill, where she shared her and our family story with representatives from Virginia and Minnesota.

Currently, Lora is asymptomatic at age 60. She continues to live life fully, while helping to actively advance ALS research and advocacy, inspiring hope for many families like ours.

I, Lynn Koll, have chosen not to undergo genetic testing at this time for the C9 gene. I follow and support the ALS community through various social media forums, offering empathy, condolences, prayers, poetry, resources, research, and hope to caregivers (cALS) and people living with ALS (pALS). I closely follow legislation in Minnesota, including the proposed “Death With Dignity Act,” and intend to advocate more actively for its passage to ease the burden for ALS patients and their families.

I admire my 3 sisters, Anne, Jan, and Lora, and see them as true heroes: remarkable women whose actions and spirit embody the essence of Women’s History. Their legacies, rooted in compassion, conviction, and advocacy, will continue shaping the future for all affected by ALS.

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