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Huff, a fighter for life and patients’ rights

Special to the Daily Planet
Tuesday June 05, 2001

At age 4 Stephanie Huff’s parents were told she could possibly live until 11.  

After a valiant struggle with cystic fibrosis, Stephanie died at Stanford Hospital on March 25 at the age of 39. She had a remarkable resilience, discipline and persistence in dealing with the challenges of accessing medical care for her condition and patients’ rights in general. 

Motivation and enthusiasm for life kept her alive all these years, well beyond expectations. 

She was a member of the Berkeley Fellowship of Unitarian Universalists where she sought a spiritual home. In 1999 she asked the Social Action Committee of the Fellowship for help in getting on the list at Stanford for a double lung transplant, having been turned down previously. The Committee brainstormed with Stephanie and petitioned Stanford in every possible way to reconsider but they declined to deal with the Committee. Then Judith Scherr of the Daily Planet wrote an excellent & touching article on Stephanie’s plight. This was followed by other media articles and likely persuaded Stanford to “reconsider,” but it may have been too late 

physically and she was turned down for the last time. But Stephanie was much more than her fight against the medical establishment and her “rage against the dying of the light.” (Dylan Thomas) Since her student days at Santa Cruz she had been involved with feminist, peace and justice and disability groups as well as Livermore Action Group and the San Francisco/Lesbian/Gay Chorus. Despite her failing strength, she remained vitally interested in her family, friends and current events. Till the end she drew inspiration from music, art and her devoted family. 

She is survived by her mother Carolyn Carpenter of Pt. Richmond, her father and stepmother in Hawaii and her brother and family in Massachusetts. 

A Life Celebration will be held Sunday at 5 p.m. at the Unitarian Universalist Fellowship Hall at 1924 Cedar St. The Hall is wheelchair accessible and all are welcome. Stephanie’s favorite Thai and Mexican food will be served after the Memorial Service. Donations can be made in Stephanie’s memory to the Richmond Art Center, 2541 Barrett Ave., Richmond, 94804. For further information call 528-5403. 

Obituary submitted by friends of Stephanie Huff at the Berkeley Fellowship.