THL-LOGO


Clinical Trial: An ALS Memoir of Science, Hope and Love

0721-Boat-Stairs-850

By Robert K. Ranum

After I was diagnosed with ALS in 2016, I began writing a memoir to tell my story. I may be the luckiest ALS patient alive, if you can call someone lucky with a disease that generally causes death three to five years after diagnosis. I’m lucky because my wife, Laura, is an internationally respected scientist who knows more about my particular disease than almost anyone in the world. Her connections resulted in my participation in a clinical trial at Johns Hopkins for a new drug targeting the specific genetic mutation that I have. That may be why I am doing well over five years from diagnosis, still walking, swimming, playing guitar badly, talking slowly and generally enjoying life. Or it may be the paleo diet that we started years ago, or the metformin that I’m taking based on Laura’s research, or the regular exercise we’re getting or the no stress lifestyle that I’ve adopted. I write about all this in the Memoir. Sadly, the written word is to truth as a toy horse is to a real horse, but it is all we have. I am hoping to leave something behind that will remind my family how much I love them and tell the rest of those who might happen upon this book a little about my life. Not because my life was particularly important to anyone but me and my family, but because we all want to reach out to each other. I believe that’s a good instinct. We should all reach out and connect and embrace our common humanity. There is much more that connects us than divides us. 


Florida

The conversation about moving to Florida started when Laura and I were in Costa Rica in January, 2009. Laura had organized a scientific conference in San Jose, Costa Rica and I joined her after the conference for a week of vacation. During a conference dinner one evening before I had arrived, she was chatting with a friend, Dr. Maury Swanson, from the University of Florida. Laura and I grew up, went to college and had at that time spent our entire lives in Minnesota except for occasional brief vacations or college studies abroad. Like every Minnesotan who escapes Minnesota in January for a brief but wonderful break from the long, cold, Minnesota winter, she was intoxicated with this new, warm, green paradise and wondering aloud why we lived in a place with such a hostile environment.  That prompted Maury to suggest applying for a position at the University of Florida. He said, “We’ve got a position opening up. Why don’t you apply to UF? We’d love to have you.”

At the end of the conference, we left San Jose on a de Havilland Otter, a single engine prop plane seating about 10 people, operated by Sansa Airlines, and flew to Puerto Jimenez, a small town on Costa Rica’s Osa Peninsula. The Peninsula is famous for the Corcovado National Park, known as having a diversity of biological species not surpassed by a region of similar size anywhere in the world. We landed on a gravel runway just as a goat crossed ahead of the slowing airplane. Our destination was the Bosque del Cabo, an ecotourism resort with luxurious accommodations set amid one of the only old growth rainforests on the Pacific Coast.

It was a perfect environment for Laura to work on persuading me to consider a move to Florida. The resort is located on a bluff overlooking the Pacific and the deck of our cabin gave us a wonderful view of blue water far below stretching to the horizon. As we admired the view and watched for Scarlet Macaws and monkeys, the icy bonds that tied us to that frozen land in the North may have thawed a bit. Still, when Laura mentioned the idea of moving to Florida, I said, “Are you crazy? People go to Florida to die. No one goes there to work.” 

I added, “And what would I do? You would have to get a big raise to replace my salary if I left Fredrikson.”

I had at that time been a lawyer at Fredrikson & Byron, P.A., one of the largest law firms in Minnesota, for twenty-six years. I was a business lawyer with a good practice that had allowed us to send our two kids to private schools and now college. I had some good clients in the Minneapolis area and enjoyed my work. A move would put my practice at risk and, from my point of view, just didn’t make sense. 

I felt a little guilty about that conclusion, however. I had been a bit of an anchor on Laura’s career. Many professors move to advance their careers, but Laura had stayed at the University of Minnesota to allow me to pursue my legal career in Minneapolis. She completed her graduate work there, did a post-doctoral study there, became an assistant professor there and then finally a full tenured professor at the University of Minnesota. She was successful enough to get occasional questions about whether she would consider a move, but she rejected them all because she knew that moving the family would cause too much disruption. 

The possibility of a position at the University of Florida was more interesting to Laura than any of the others for several reasons. She already had productive collaborations with several colleagues there and wanted an opportunity to build a broader research program focused on neurogenetics. 

Also, the kids were leaving home. Paul was already away at St. Olaf College in Northfield, MN and Maddie, two years younger, would graduate from high school in the spring and start at St. Olaf in the fall. A move wouldn’t disrupt their lives significantly. We had lived in the same house at 2116 Carter Avenue in St. Paul for their entire lives, so at least in Laura’s mind, it was time for a change.

When we returned to frozen Minnesota from that trip to Costa Rica, the seed had been planted. But like most things in the Minnesota winter, it lay dormant for months. When Laura suggested that applying might cause her colleagues at the University of Minnesota to take her less for granted, I thought, “Right, that couldn’t hurt.” She worked up an application and sent it in. Maddie didn’t like the idea. She said with authority, “Mom, families are like trees. They spread roots. You can’t just uproot them and move them to a different state.”

I continued to go into the office every day, sit down at my desk and work at my computer and make and receive telephone calls. But now I observed my day with the possibility of change in my mind. Most of my meetings were internal meetings with other lawyers at Fredrikson about internal firm stuff, not meetings with clients. While they were enjoyable because after all those years most of the lawyers at the firm were good friends, it wasn’t really important for me to be there. As for client work that actually generated revenues, 90% of that was done by computer and telephone which I could do, I realized, anywhere.

My most important client, Cardiovascular Systems, Inc. (“CSI”) held board meetings every quarter which I attended, but the directors flew in for those. Why couldn’t I do the same? Even the CEO of CSI lived in California and commuted, as needed, to Minnesota for company business. Although some board members complained about that, they let him get away with it. I began to think it might be possible to stay with Fredrikson & Byron, move to Florida and travel back to Minnesota as necessary for meetings.

This idea presented a couple of significant challenges. Each state has its own licensing requirements and a lawyer who practices law in a state in which he is not licensed is subject to enforcement action for the unauthorized practice of law. Some states, like Florida and California, are more aggressive about enforcing their rules on unauthorized practice of law because they see more lawyers from other states moving there and practicing law without a license. I knew I would have to get licensed in Florida in order to practice law there. And I knew to get a license in Florida, I would have to take and pass the Florida Bar Exam.

The other challenge would be generating new clients in Florida. I generally worked with early stage companies. This was fun because there is an energy in start-up companies that is often missing in large institutional organizations. I worked directly with the founders or management team and shared the adventure of each successful fundraising or merger or the excitement of an acquisition that provided a liquidation event for investors. I was a counselor to officers and board members, providing business advice as well as legal advice. 

But early stage companies have a life cycle. Some don’t make it and often cease business, sometimes leaving Fredrikson with unpaid legal bills. Others, if they are successful, get acquired by a larger company that is represented by other legal counsel and we lose the client. CSI is the rare exception, a long-term client that I had represented since the founder and CEO came to me in 1994. I had represented CSI through its growth from a start-up company (that almost failed with the market turmoil in 2000) to a public company with a market capitalization in excess of $1 billion. But I knew eventually I would lose CSI as a client also, most likely through an acquisition, I thought then.

Therefore, my continued success as a lawyer required developing new clients. That would be much harder in Florida, where most people would never have heard of Fredrikson & Byron, P.A. In Minnesota, Fredrikson is well known in the business community as one of the top law firms. Clients who hire me know that they are getting a team of top-notch lawyers to work on their matters. I can invite them to visit our impressive offices on the 34-40th floors of US Bank Plaza in Minneapolis. In Florida, my business card would have the name of a firm no one had heard of, and I would be working from home, at least at first.

In quiet moments, I thought about what I owed to Laura. Her work, although not as well compensated as mine, was more important. She was breaking new ground in research on neurological diseases, doing work that was one of a kind. I was doing work that could be done by thousands of other lawyers. She deserved more support than the University of Minnesota was giving her. She had shortchanged her career for me and the kids. Maybe I should take a risk with my career for her.

I also considered my age, 51, and the fact that my mother had died from ALS at age 62. We knew from the pattern of inheritance in my mom’s family that there appeared to be a 50% chance that I would inherit the gene that caused mom’s ALS and also die early from ALS. This made the risk with the career seem insignificant and strengthened my desire to support Laura in whatever she wanted to do. We had been financially conservative and responsible all our lives and now had more resources to take risk than ever before. And it might be fun, I thought.

By the time that Laura received an invitation from the University of Florida to come down for interviews, I was willing to move ahead with caution.


Gainesville

The recruitment process took a year and half. Laura went for the first visit alone in the summer of 2009 to give a seminar and have a round of interviews. That went well and so I joined her on the second trip in the fall for additional discussions and interviews. Laura presented her list of terms that she would like to see in an offer letter: A start-up package that would allow her to set up her lab, financing for a new Center for NeuroGenetics that Laura would lead, money for additional recruitments to the Center, and a salary with a nice increase from her University of Minnesota salary.

Laura’s second visit was my first time in Gainesville. There is no direct flight from Minneapolis to Gainesville. Delta offers several flights each day from Minneapolis to Atlanta with a travel time of about two hours, but then the Gainesville traveler is required to connect to a flight to Gainesville almost always on the D concourse of the big Atlanta airport, served by one of Delta’s partners operating a smaller plane, with a travel time of about an hour. That connection alone made clear that we were going to a small city. With time in the airports prior to flights and connecting in Atlanta, the trip takes about 5 hours.

Upon landing, we disembarked into the single waiting area of the Gainesville airport and after a short walk, we were on the street. I was struck by how small the airport was. I told myself, “small is good. The less time we waste in airports, the better.” But I worried about the size of the market for lawyers like me.

We stayed at the Hilton Hotel on 34th street, near the UF campus. While Laura was away at meetings, I went for a run. It was hot. I ran through the campus to get a feel for the place. It was beautiful, with red brick buildings along tree-lined streets with a 20 mile per hour speed limit. I ran by Lake Alice and smiled at the exotic sight of a beware of alligator sign. I stopped to marvel at the Baughman Center, a curious chapel on the shores of Lake Alice with a gothic-inspired, modern design, with soaring windows. Eventually, I got to the Ben Hill Griffin Stadium, aka “the Swamp.” As a sports fan, I was aware of the storied history of Florida football and the national championships in 2006 and 2008 and felt as though I was in the presence of greatness. I was surprised to see that the stadium was open and as I cautiously jogged up the ramp, expecting someone to tell me to get lost, I saw that others were running up the steps inside the stadium. After pausing a moment to admire the field and the empty bowl of the great stadium surrounding it, I too, ran some steps in the stadium.

On the way back, drenched in sweat, I thought maybe I could make this work. Gainesville was small but the University of Florida was an impressive place. I imagined opening a satellite office of Fredrikson & Byron in Gainesville with a few associates. If Laura wanted to come here, I decided, I would work hard to build a practice here.


Robert-Bert-Ranum-150Robert "Bert" K. Ranum has practiced corporate and securities law for 37 years at Fredrikson & Byron, P.A. where he is now Senior of Counsel.  Since 2010 he has worked primarily remotely from Gainesville, Florida, where his wife is a professor at the University of Florida.

What inspired you to take on a creative hobby? After I was diagnosed with ALS in 2016, I began writing a memoir to tell my story.  I may be the luckiest ALS patient alive, if you can call someone lucky with a disease that generally causes death three to five years after diagnosis.  

What artist or author inspires you? I love Ron Chernow’s work and enjoyed both Alexander Hamilton and Grant. I’m currently reading The Premonition by Michael Lewis and recommend it highly.

Managing Editor
Nick Hansen

Executive Editor
Joseph Satter

Advertising
Sheila Johnson