Cystic Fibrosis Foundation

Venture philanthropy is a growing movement that includes the idea of a nonprofit selling access to its data for profit. Nonprofits make investments that may pay dividends down the road, somewhat like what big academic institutions have been doing for years. It differs from traditional sources of funding for nonprofits, which most often depend on donations from foundations, corporations and wealthy individuals.

This form of venture philanthropy garnered attention last year when the Cystic Fibrosis Foundation sold its rights to royalties from Kalydeco for a landmark $3.3 billion.

When a breakthrough cystic fibrosis drug with a sticker price of more than $300,000 per year hit the market two years ago, the cost raised familiar questions about the sustainability of ever-climbing drug prices in the United States.

Now, a private foundation, the Cystic Fibrosis Foundation, that invested in the drug early has sold it royalty rights for $3.3 billion, and new questions are surfacing about the ethical implications of nonprofits acting as venture capitalists.

The Cystic Fibrosis Foundation has been awarded “best video” in the DoGooder YouTube Nonprofit Video Awards for the Large Nonprofit category. The annual contest is designed to recognize the creative and effective use of video among charitable organizations.

The foundation’s video, “Adding Tomorrows,” is a portrait of three individuals who live with cystic fibrosis. It was selected as a finalist from more than 1,000 nonprofit entries, and received the most votes from the public in its category.

Last month, YouTube began accepting submissions for its annual DoGooder Nonprofit Video Awards. Now that the submission period is closed and 16 finalists were selected by judges, it's time to get your votes in to help decide the winners.

More than 81,000 nonprofits have partnered with the online shopping mall GoodShop.com and Yahoo-powered search engine GoodSearch.com to enable their supporters to generate donations by shopping online or searching the Internet.

BETHESDA, Md., November 24, 2009 — The Cystic Fibrosis Foundation announced today that CVS/pharmacy and Warner Home Video will partner with the Foundation this holiday season to raise critical funds for cystic fibrosis through the sale of classic family movies.

August 12, 2009 — The Cystic Fibrosis Foundation announced it has received a 4-star rating for sound fiscal management for the second year in a row from Charity Navigator, the largest charity evaluator in the United States.

New York, NY, July, 2009 — As a result of the declining economy, individuals are looking for innovative and free ways to help their favorite charities, knowing that because of a national drop in donations, these causes need help more than ever!

AMHERST, N.Y., July 29, 2009 — SofTrek Corporation, a leading provider of donor management software and fundraising solutions for nonprofit organizations, announced that it has formed a strategic partnership with WealthEngine, a leading provider of sophisticated prospect research and analytics for nonprofit organizations and institutions of higher education.

Amherst, New York, July 24, 2009 — SofTrek Corporation, a leading provider of donor management software and fundraising solutions for nonprofit organizations, announced today the release of ClearView technology for its PledgeMaker donor management software. ClearView enables users to achieve a complete and clear view of their donors by allowing them to personalize their workspaces and by giving them easy access to the donor-related information they need, when they need it, and in a format they find most useful.