last updated June 24, 2006

History of the Chicagoland Adult Cystic Fibrosis Association

Current contents:
25 Years! [a slideshow celebrating the 25th year of the Chosen Few/Chicagoland Adult Cystic Fibrosis Association/Chicago CF Awareness Day]

Archive documents [under construction]

Many thanks to Ken O’Brien and Janice (Benning) Tate for being the first ones to compose a narrative history of CACFA. We welcome other submissions about the Chosen Few, CACFA, and the CF Awareness Day!

 

 

 

25 Years!

 

Chosen Few History

In the mid 1980s an adult with CF, Joe Kowalski, wanted others with CF to have the opportunity to meet one another. First, he organized a pool party. The Greater Illinois CFF assisted him by mailing out invitations to those with CF 16 and older. There was an excellent response, so he organized additional parties.

By 1986, based on the input of those who attended the summer parties, Joe initiated monthly meetings for adults with CF. At one of the first meetings, he asked what name the group should be called. Arnie Witzke, age 31, suggested that since we were living longer than the life expectancy and to play on the initials of CF, how about “Chosen Few?” Those who attended the meeting heartily agreed. (After the name was well established, it was realized that “Chosen Few” unintentionally could have an unwelcoming connotation.)

Chosen Few defined itself as “a support group for adults with cystic fibrosis who are sixteen years old and over. We meet monthly to share information and experiences with each other. We increase our understanding of how to live with cystic fibrosis through the meetings and we have fun in the process.”
In 1987, Chosen Few accepted the challenge to help plan the annual day of CF education called Awareness Day. Right away the group had creative plans for the September event. In March, Joe announced that he and his wife were moving to Connecticut and Janice Benning, age 23, became the group’s coordinator.

By now, the Chosen Few had an established pattern of summer pool parties, speakers at luncheon meetings from the fall to the spring, a holiday party and in between all that, planning Awareness Day. Speaker topics included research information, insurance issues, relationships, alternative healthcare, life issues, parenting, and choosing a doctor.

Maribeth McLean, age 23, initiated a Chosen Few Caregiver of the Year award. The recipients were in 1988 Maureen Garvey (nurse and Chosen Few medical advisor), in 1989 Linda Highham (the group’s personal support at the CFF) and in 1990 Art Sontag and his daughter Debbie Sontag (special treatment advocates). A newsletter was sent out to more than 50 adults with CF.In 1990, the Chosen Few had a role in helping a new national publication, called CF Roundtable, for Adults with CF. Joe Kowalski and Ken O’Brien each served on the governing board for CF Roundtable, USACFA. In July 1991, the group held its first board meeting in Chicago and the five board members attended a pool party at Arnie Witzke’s. Chosen Few members, including Janice Tate and Mike Williams, also wrote articles for the newsletter. In 2001, USACFA held a national conference in Chicago.
In February 1992, after being coordinator for 5 years, Janice “retired” and Mike Williams, age 29, replaced her. A few changes occurred during Mike’s tenure. Because of the responsibility load, the planning of Awareness Day was the typical focus of the meetings, with occasional guest speakers.

Chosen Few continued having pool parties and an annual holiday party, which for five years was held at Maureen Garvey’s home. The Chosen Few officially registered as a non-for-profit group under the name Chicagoland Adult Cystic Fibrosis Association (CACFA). To be more welcoming, there was an attempt to take on the new name altogether, but the familiar name of Chosen Few stuck.

As the risk of cross infection between CF patients became an increased concern the membership dwindled. There were very few new members and only a core of original members. With fewer members, the load for each adult to accomplish the task of planning Awareness Day became too heavy. Eventually Maureen Garvey recruited other CF caregivers to help organize the event. Thus began the Awareness Day Planning Committee.

Chosen Few no longer meets nor has a newsletter. But with the CACFA as the financial body, the Awareness Day Planning Committee has taken on full responsibility. Some adults with CF continue to contribute to the planning by serving on that committee. Compiled by Ken O’Brien and Janice (Benning) Tate, June 2005.