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USACFA mourns the loss of Kathy Russell

Kathy Russell

April 17, 1944 - May 13, 2023

It is with great sadness that we share the passing of Kathy Russell at age 79. Kathy was so many things, aside from being a founder of USACFA and CF Roundtable. She was a loyal friend, a licensed practical nurse, exceptional cook, canner of her own grown tomatoes and vegetables. She had a clever sense of humor and could make a statue chuckle. She imbued her empathy and caring to share her stories of her own CF experience on the pages of CF Roundtable, but also edited other people’s submissions so that their voices shone through. Kathy was also part of a strong bonded team with her husband Paul. Wherever Kathy was, Paul was not far away. They were married on Marsh 27, 1965 (58 years!), and had a very happy and loving life together throughout life’s curves and bumps. They weathered it together.


Kathy Russell and a few other people with CF heard a call for assistance from Lisa McDonagh to help her publish what was then known simply as The Roundtable. She was publishing it all on her own and, after each issue, she would be hospitalized with pneumonia, so she knew she needed help. Along with Kathy, there were: Melinda Timmermans, from Florida; Joe Kowalski, from Connecticut; Connie Knoles, from Oregon; Ken O’Brien, from Illinois; and Larry Culp, from Pennsylvania. These five people became the founders of the United States Adult Cystic Fibrosis Association, Inc. (USACFA). They registered it to be a nonprofit in 1990. While Kathy was a founder, she was designated as the treasurer in 1990 and later elected to the board of directors in 1993. She held many positions at the organization by being elected to every officer position from treasurer, secretary, editor, and director. She was president from 1997 to 2005 and managing editor of this publication from autumn 2011 to autumn 2019. She started her column called Speeding Past 50 in winter 2006 when she was 62. In this column, she shared her own life lessons living with CF: Topics ranged from senior aches and pains to to sinus disease and what she did to combat it to wearing comfortable shoes because they just felt better than the coveted polka-dotted high-heals she loved. She adapted to life as it came her way with a smile and a good sense of humor.


She was much looked up to in the CF community as she was also very involved in planning conferences and almost always attending them all over the country (before stricter infection protocols did away with most of them. She was also one of the oldest living people with CF most people knew. Oddly, her parents were told when she was diagnosed in 1956 at age 12, she would only live another 6 months longer. That they should take her home and cherish the time they had left. She showed those doctors! Which is why she was a great problem solver. She didn’t take no for an answer if she felt she could do it. If she wanted something, she worked hard to get it. Her favorite job was working as a nurse in the newborn unit, and actually, probably the safest for someone with CF because it was free from infectious disease. She was a smart cookie.


Her favorite accomplishment that made her proudest, according to Paul, was being part of CF Roundtable and the CF community itself. She loved nothing better than talking to people who reached out to her and who might have wanted guidance, support or just an available ear to discuss CF. She was a kind and interested listener. In later years as she needed more time for herself, she mainly emailed with people.


As the years advanced, Kathy loved sitting in her comfy recliner doing 1000-plus-piece puzzles, taking day trips with Paul, cooking extravagant dinners and deserts for just the two of them, visiting friends and family when she could. She will clearly be missed by all who knew her. The CF community has lost a loving and fierce advocate. She leaves behind a beautiful legacy that generations will benefit from even if they did not have any connection to Kathy. She paved the way in many ways to living a long and fruitful life that enriched so many. It was an honor to know her.


It is Kathy’s wishes that if anyone is so moved to make donations to CF Roundtable (https://www.cfroundtable.com/donorbox), CFRI (https://41224.thankyou4caring.org/donate-now) and CFF (https://www.cff.org/donate).

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