USACFA History: How a group of adults with CF helped create a community without computers, email, or the internet

By: Laura Mentch

Our story begins with Lisa McDonough, a young woman with CF. Lisa wanted to find a way for people with CF to connect with each other and share their thoughts and strategies related to living with CF. In 1989 she singlehandedly produced 4 issues of Roundtable, a newsletter for adults with CF. Lisa knew that she benefited from talking to people with CF on the phone or in CF clinic and she wanted other adults with CF to benefit from connecting and sharing information about living with CF, medications, and staying healthy.

First, Lisa contacted CF Care Centers to let them know of her idea and to ask for addresses for any interested adults with CF. At the time there were no adult CF Care Centers.  Lisa also found interested adults when she was given a mailing list provided by the International Association of Cystic Fibrosis Adults (IACFA).  Lisa sent letters inviting participation and requesting donations to cover postage.  Lisa wrote and collected articles from others then printed and distributed the Roundtable newsletter. The positive response to the newsletter was overwhelming.  Adults with CF were thrilled to have a way to read about others facing the same challenges they were facing every day.   It took a lot of time to write, publish and distribute the newsletter and Lisa realized she needed help so she could continue to focus on her health. This was a time when there was no Pulmozyme, no TOBI, no Cayston and it was a hard fight against the effects of CF. Realizing she would not be able to continue producing the newsletter alone, she invited other adults with CF to join her efforts.  The U.S. Adult Cystic Fibrosis Association (USACFA) was created and CF Roundtable was born.

The first issue of CF Roundtable was published in 1990.  Adults with CF living in Connecticut, Oregon, Illinois, Pennsylvania, and Florida met by telephone to create a newsletter the old-fashioned way:  typing, copying and mailing CF Roundtable to subscribers.   The initial group of devoted volunteers, Joe Kowalski, Connie Knoles, Ken O’Brien, Larry Culp, Melinda Timmermans, and Kathy Russell became the first board of directors.

CF Roundtable has been published quarterly every year since. Kathy Russell, the first treasurer, and current managing editor, has been actively engaged for each of these 27 years.  In the early years, the directors met in person for annual meetings. Over these years, there have been 72 volunteer directors for the US Adult CF Association.

Highlights of CF Roundtable history:

1994: a big year for CF Roundtable!

  • Jack Jacoby, a physician with CF, became our medical advisor
  • Lisa McDonough wrote the first Spirit Medicine column
  • Beth Sufian began writing her column, Ask The Attorney.

1999:  The first USACFA conference for adults with CF was held in Houston, Texas. 

Over one hundred people with CF came from all over the country to attend.  The two-day conference featured leading CF physicians and researchers.  A cross infection policy similar to the one used by CFRI was used to reduce the possibility of cross infection.  Michelle Compton had all of the Looking Glass photographs shipped to Houston and there was a beautiful reception where attendees and members of the Houston community could view the photographs.

In addition, the first USACFA awards were presented at the conference.

  • The Jacoby Angel Award was presented to Robyn Petras, a woman with CF. The award was established to honor a person with CF who is making a difference in the lives of one or more people with or without CF.
  • The USACFA Founders’ Award recognizes a person who has made an outstanding contribution to the adult Cystic Fibrosis community. The first honoree was Lisa McDonough.

2001:  A second USACFA conference for adults with CF was held in Chicago, Illinois.

  • CF Roundtable highlights exercise with the focus topic, How Exercise and Diet Affect our CF.
  • Laura Tillman first writes the column Information From The Internet.

2004: We have a website! Andrea Eisenman, director since 2001, is our webmaster.

2005:  Julie Desch begins writing the Wellness column.  Her second column, “Top 10 reasons to begin exercise,” appears in 2006.

2013:  Sponsor support makes it possible for CF Roundtable to be offered free for everyone.

2016:  The Lauren Melissa Kelly scholarship program is introduced providing scholarships to adults with CF.

2017:  The autumn issue of CF Roundtable was the largest issue ever at 56 pages!

In 2018 directors of the US Adult Cystic Fibrosis Association continue to fulfill these goals of the organization’s 1990 mission statement:

  • to publish a quarterly newsletter to facilitate the exchange of information among adults who have CF,
  • to foster the exchange of information among adults who have CF, and
  • to foster a nationwide network of support for adults who have CF.

Directors, columnists and writers bring CF Roundtable to 2,236 subscribers throughout the world electronically and/or by mail. We are active on Facebook, Twitter, and LinkedIn, send email blogs and maintain www.cfroundtable.com.

 

We all are still volunteers.  Please join us.

4 thoughts on “USACFA History: How a group of adults with CF helped create a community without computers, email, or the internet”

  1. Thanks for the informative history lesson! Isn’t it amazing how far USACFA and CF Roundtable have come? What an amazing organization.
    For all those, past and present, who have been involved with USACFA – you should be proud of yourselves and your contributions to the CF community.

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