Episode 131 – Featuring A Look At the Cystic Fibrosis Foundation of Western Pennsylvania

Investing in a Cure:  How the Cystic Fibrosis Foundation’s Business Approach Has (Literally) Helped Save Lives

Over the past few decades, medical charities supporting everything from cancer research to AIDS to heart disease, among many others, have become BIG business in the United States. As in “billions of dollars” big.  And through very public initiatives such as the Ice Bucket Challenge for ALS  to the mass-market co-branding of the Susan G Komen For the Cure (think of all the pink you see when watching an NFL game in October), these charities have done a very effective job in weaving their message into the public consciousness.

But what about a charity that has taken “big business” to a whole new level, simply by acting like one?

Ever since ts inception in 1955, the Cystic Fibrosis Foundation, through its 80-plus chapters throughout the United States (including its home base in Bethesda, Maryland), have worked tirelessly to find a cure for Cystic Fibrosis, which the Foundation classifies as “a life-threatening, genetic disease that causes persistent lung infections and progressively limits the ability to breathe”.   The disease, for which there is no cure, currently impacts over 30,000 people in the U.S.

In 1989, Foundation scientists initiated the first breakthrough in this process, by discovering the gene that causes this disease.   But in the years after that, despite their best efforts, little headway was made when it came to actually finding a cure.  In 1999, however, the Foundation made an unprecedented decision by taking the venture capital route, eschewing academic research grants as their primary path to find a cure, in favor of investing millions of dollars into private drug companies charged with helping create drugs that help treat the disease.

Since that initial investment, the results have been phenomenal for the foundation, on two fronts.   First, their investments have led to the creation of two drugs, Kalydeco and Orkambi, that have received the approval of the FDA (Food and Drug Administration) as a means to treat patients with Cystic Fibrosis.  And secondly, in the Fall of 2014, the Foundation sold the rights to future royalties of the drugs for over $3 billion, a record intake for any charity organization in the history of the U.S.

Other charities have taken notice of the Cystic Fibrosis Foundation’s successes, and every year, the percentage of their resources that many of these charities invest in private companies steadily increases.

In addition to the Foundation’s successes as an ad hoc venture capital firm, they have also done an exceptional job in another undertaking that is seemingly more and more difficult:  engaging young people to take action for a good cause.

On this edition of The Raja Show, Raja takes a look at the Cystic Fibrosis Foundation’s unique business model, as well as the strides the organization has made in engaging youth, especially in Western Pennslyvania.  We’ll welcome Mary Pat Joseph, the Executive Director of the Cystic Fibrosis Foundation’s Western Pennsylvania Chapter , to talk about what is being done in the Pittsburgh area to raise awareness for Cystic Fibrosis. In addition, she will be joined by Joerose Tharakan and Anne Marie Brnardic, two members of the Foundation’s “Finest 50″, young Pittsburgh professionals who have dedicated themselves to raising awareness for this incredible organization.

For anybody in our listening audience who appreciates the value of charity, and putting your efforts and resources into the mission of giving back (especially with regard to an organization boasting such an “outside the box” business model), this show is a MUST for you.