Chordoma Foundation

Putting the “Pro” in Pro Bono: Smith, Anderson, Blount, Dorsett, Mitchell & Jernigan, LLP

Kerry Shad was already a nationally recognized employment law and litigation attorney by 2007, but off the clock, she was just Aunt Kerry, devoted godmother to a good-natured, sports-loving pre-teen named Justin Straus. At the time, Justin was in year five of a six-year battle with chordoma, and Kerry and her partner Julia had been fighting alongside Justin’s parents, Heather (Kerry’s friend since college) and Steve, to learn everything they could about the little-known disease, and find a way to save Justin’s life.

Later that year, when Justin’s family decided to get involved with the recently-formed Chordoma Foundation, they started coming to Kerry for help with all of the legal matters that face a new nonprofit. She was, of course, happy to lend a hand. Kerry gave a seminar on the relevant provisions of the Family Medical Leave Act (“FMLA”) at one of the first Chordoma Community Conferences.

Soon, as the Foundation started ramping up its research efforts, Kerry pulled in her colleague, John Therien, then an associate on the corporate transactions team specializing in the life sciences industry. Through his experience working with companies to bring discoveries made in university labs to market, John was intimately familiar with the behind-the-scenes legal workings of biomedical research and drug development – just the perspective the Foundation needed on its team as it sought ways to accelerate the research process.

John – who had been totally unfamiliar with chordoma until then – saw the potential to use his expertise to help the Foundation improve the way research gets done and dove headfirst into the work. The first task was crafting agreements to enable sharing of tissue and cell lines among researchers. From there, the focus moved to developing grant agreements that favored the interests of patients. Eventually, John became enthralled and increasingly devoted to the cause. Within a year he also volunteered to give a seminar on health care powers of attorney and living wills for patients and family members at a Chordoma Community Conference.

“As a corporate transaction lawyer serving the life sciences industry, I didn’t have much of a chance to do pro bono work that utilized my particular legal experience. So when I was asked to work on agreements that would enable researchers to have reliable access to chordoma cells, I jumped at the chance.” – John Therien

 

But as the Foundation was getting stronger, Justin was growing weaker, and in 2008 he lost his brave and prolonged battle with the disease. Kerry was devastated, but her commitment to the Foundation never wavered. She and John continued to do everything they could to help propel chordoma research forward, bringing other Smith Anderson team members into the fold when needed.

“Through losing Justin, I came to appreciate both the scientific urgency and emotional imperative of a better care experience for patients and families, and I knew that, no matter what, we had to keep going. For me, it was personal.”  – Kerry Shad

 

Board support

In 2009, Executive Director Josh Sommer asked John if he would consider serving on the Foundation’s board, and, again, John didn’t hesitate. He served a six-year term, ending in 2015, during which time he provided invaluable legal guidance as the Foundation added a series of new programs to advance research and serve the chordoma patient community. Most notably, with John as its legal and contractual architect, the Foundation was able to put in place the vital research-enabling infrastructure needed to discover and develop new treatments for chordoma – a Biobank to collect and distribute vital tumor tissue, centralized repositories of cell lines and mouse models, a preclinical Drug Screening Program, and a Clinical Trials Program. Together, these programs have helped usher in a remarkable wave of research advances for chordoma, and have served as templates which are now being replicated for several other rare cancers.

“The speed with which this organization has transformed from a tiny kitchen table non-profit to a leading rare disease research organization continues to astound me. When I stumbled into this opportunity 10 years ago, I didn’t realize it would become one of the most rewarding of my professional life. I am richer for having met and worked alongside these outstanding people, board, and the staff.” – John Therien

 

“He won’t say this,” Kerry pointed out, “but John is a preeminent attorney in his field, and has brought his extraordinarily valuable expertise to bear on behalf of the Foundation. During his time on the board he became a partner at the firm, but despite a very demanding schedule he continues to find time to help when the Foundation calls. John does this for free – and does it enthusiastically.”

When John rolled off the board in 2015, Kerry rolled on, ready to take on a more formal role in carrying on Justin’s legacy. While she enjoys participating in the strategy and learning about the science, Kerry admits that what she gets the most out of is seeing how the work of the Foundation positively impacts families.

“What I most enjoy is seeing how the Foundation helps people in awful circumstances – from the very beginning of ‘what is this’ and on through treatments – navigate this experience. I know what it feels like when families don’t have access to good information or support, and it is a privilege to be part of a team that believes in their work and is committed to making progress happen.” – Kerry Shad

 

A deepening partnership

As the Foundation has grown and our needs have expanded, so too has our partnership with the Smith Anderson Team. Many lawyers and paralegals have pitched in to support the Foundation over the years, including CPA and business lawyer Kimberly Swintosky, head of the employment practice, Kimberly Korando, tax and nonprofit experts Walter Rogers and Josh Bryant, and several others. All told, over the past decade, the Smith Anderson team has contributed in-kind services amounting to nearly half a million dollars.

And while most of the individuals and families we work with will not recognize their names, it is an understatement to say that the Foundation would not be where it is today without them. They share their time and expertise quietly, generously and with great professionalism, and have been behind many of our most exciting accomplishments.

We are immensely grateful for the generosity and support of the entire Smith Anderson team and look forward to our continued partnership.