Cystic Fibrosis Foundation

Nonprofits Selling Access to Research Data a Growing Movement
March 2, 2015

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.

With Big Money Comes Big Questions for Cystic Fibrosis Foundation
December 8, 2014

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.

Cystic Fibrosis Foundation Awarded First Place in YouTube Nonprofit Video Contest
April 5, 2012

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.

Searching and Shopping for Good
December 29, 2009

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

The Cystic Fibrosis Foundation to Benefit from Holiday Film Promotion
November 24, 2009

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.

SofTrek Corporation Enters Business Partnership with WealthEngine
July 29, 2009

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.

SofTrek Corporation Announces ClearView Technology for PledgeMaker Donor Management Software
July 27, 2009

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.