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Published On: Thu, Jan 30th, 2020

Jeffrey Stevenson and the Mission Behind FRAXA Research Foundation

A Fund Manager’s Career from Private Investment to Charity

When Jeffrey Stevenson joined VSS, in 1982, the New York based firm was a boutique M&A shop focused on media and specializing in the magazine publishing industry. Five years later, at the age of 27, Stevenson launched and managed the firm’s first private equity fund, exclusively dedicated to investing in media companies.  

By coincidence, the first close and final close of the fund occurred during a very interesting point in time – October 1987, otherwise known as Black Monday. Stevenson’s first investment was in a TV Broadcasting company. Under his stewardship, the fund began buying into television and radio stations with the ultimate objective to build a group and create value.

Jeffrey Stevenson

Jeffrey Stevenson remained at the helm of the private equity funds through the 1990s and 2000s, two decades which saw an extreme shift and upheaval across the broadening media landscape. Media companies began to consolidate and experience a disruption. As a result, VSS shifted from investing in media companies to business information services companies.

During the same period, VSS would decide to exit the investment banking business to focus on private equity. In 2001 Stevenson became a name partner. Today the firm is known as Veronis Suhler Stevenson (VSS), and their investments have expanded to encompass lower middle-market healthcare, education, tech-enabled business services, and information companies.

In addition to managing VSS, Stevenson and his wife, Debbie have been actively involved with the nonprofit organization FRAXA Research Foundation (“FRAXA”) since 2000. Founded in 1994, FRAXA has been committed to finding a cure for the genetic condition known as Fragile X syndrome, the most common inherited cause of autism and mental impairment. 

Though prevalent, Fragile X had been previously underfunded and misunderstood. In the ’90s, the U.S. was spending merely $30,000 a year on Fragile X research. Without the aid of modern online communities or search engines, three parents of children diagnosed with Fragile X banded together and founded FRAXA in Newburyport, Massachusetts. 

Now, FRAXA is leading the way in research and development for a Fragile X cure, providing funding and expert advice to the pharmaceutical industry, as well as giving families a wealth of information on resources, referrals and support communities. FRAXA was founded by Katie Clapp and Michael Tranfaglia, parents of a son diagnosed with Fragile X syndrome, along with a third parent, Kathy May.

Testing for Fragile X syndrome is luckily quite easy and available. All that is required is a blood test, which can detect both carriers of the gene as well as those fully affected. Known to affect approximately 1 in 4000 males and 1 in 6000 females, Fragile X is a rare orphan disease that occurs when the FMR1 gene (located on the long arm of the X chromosome) fails to produce a key protein. The missing protein, FMRP, leads to impaired brain development. 

FRAXA Research Foundation’s mission from its outset has been not only the discovery and development of a cure, but also finding the most effective treatments currently available. The foundation enlists hundreds of laboratory researchers dedicated to accelerating the search for a cure, and developing more advanced therapies and medicines meant to address specific symptoms.

At age 2, Jeffrey and Debbie Stevenson’s oldest son, Taylor, was diagnosed with Fragile X. Suddenly confronted with concern over Taylor’s wellbeing, the Stevensons sought out any way to help speed scientific progress. Through their efforts and other supporters of FRAXA, their son’s disorder has hope for a treatment. Today, Taylor lives at The Center for Discover, where he enjoys daily chores and activities, including egg collection, apple picking, fishing, and feeding the center’s family of pigs.

Starting in 2007, Jeffrey and Debbie have sponsored the annual Stevenson Family Campaign, FRAXA’s largest fundraiser to date. Jeffrey is the active chairman of the foundation’s Finance Committee, while Debbie sits on the Board of Directors as Chairperson. 

Since its founding in 1994, FRAXA has funded nearly $30 million in Fragile X research globally. Part of what has made the foundation’s efforts so instrumental in groundbreaking developments is how efficiently FRAXA budgets its resources and labor. Management and general expenses account for below 4% of FRF’s spending.

In addition to his nearly two decades with FRAXA, Stevenson has sat on the Vencerx Therapeutics Board of Directors as Chairman. Vencerx focuses on the development of new and better treatments for a broad range of serious neurodevelopment disorders.

The need for progress in the field of health care and brain disorders is growing every year, every day. Statistical models predict that over the next ten years, the number of Americans over 45 years of age struggling with Parkinson’s will increase from an already dire 1 million to 1.24 million. 

By 2050, the 5.8 million Americans living with Alzheimer’s dementia are projected to increase to a staggering 14 million, more than doubling today’s current figures. Beyond Parkinson’s, Alzheimer’s, autism, and Fragile X syndrome, we should all be aware that 1 in 6 people around the world suffers from a brain-related affliction. 

The FRAXA Research Foundation and families like the Stevensons are leading the fight for better lives for everyone diagnosed with a brain-related disease. Donations to FRAXA are vital to its continued work and are welcomed via the foundation’s website – www.fraxa.org. FRAXA’s upcoming 2020 fundraiser events include a Charity Golf Tournament, a 3-on-3 Basketball Tournament for Patrick’s PALS, and a games day out for Boston-area tech companies.

Author: Digital Solutions

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