A Letter from the Executive Director

by Ann Robinson

Spring 1998

Recently, I was disheartened to see the front page headline, "Charities Use For-Profit Units To Avoid Disclosing Finances" (New York Times, 2-9-98, page 1). The article described how several nonprofit organizations have used perfectly legal but easily abused for-profit subsidiaries to potentially mask the cost of salaries and other expenses. Because a CF organization (not CFRI) was one of the charities named in the article, I want to make clear that many CF organizations exist, including CFRI, which do not operate for-profit subsidiaries. At a time when raising funds for charity is becoming harder and more competitive, it is important that we seek out legitimate avenues for raising much-needed funds. At the same time, it is imperative that we do so without appearing to do so improperly, or we risk confusing our constituency.

I see each group that supports people with cystic fibrosis and their families as a complement to every other group. Each has a slightly different focus, mission and audience. Ours is to educate and support families with CF, and to provide research funds for CF researchers who primarily do their work in the Bay Area. In some cases there are duplication of efforts. Because we all ultimately have the same goal-to live well with CF and ultimately to bring about the demise of this disease- I do not see any other group as a competitor. We must work together to support and encourage each other. In return, we ask that each group strive to be their best.

Each of these complementary groups will have a hand at touching the lives of people with CF. If we really care about CF and people with CF, we must support each other and encourage each other on our respective paths. And, part of encouraging and working together requires holding each other to high standards. Recently we were fortunate to have held our Annual CF Conference jointly with the International Association of Cystic Fibrosis Adults (IACFA), and this year we look forward to sharing it with the United States of America Cystic Fibrosis Association, (USACFA). These joint presentations have only enhanced our conference because we found that we learn much from our colleagues running other CF groups. In fact, sometimes it really takes an outsider to suggest ways to improve.

We must, in the end, demand that each group strive to do its best in our collective quest to cure this devastating disease. We urge all nonprofit organizations to consider what this poor press will cost them (and all of us who support the same constituencies) in ultimate support. We all have an obligation to avoid even the hint of impropriety when dealing with donations, diseases and the lives of the people we support.

Sincerely, Ann Robinson

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