Primary Appointment

Biochemistry

Assistant Professor of Biochem/Molecular Biology

Doctor's Bio

Ramirez-Alvarado Lab (Protein Misfolding)

A letter from Dr. Ramirez-Alvarado

5 years ago, I was a protein chemist that happened to work on a biologically relevant problem at a Medical Institution. I had no way to relate the human aspect of my research. That changed when I met Tim and Cathy Stepanek. Tim had been diagnosed with Multiple Myeloma in 2001 and was diagnosed with renal Amyloidosis in 2002. He underwent an autologous stem cell transplant in 2003. That year, he and Cathy made a very generous donation to the Amyloidosis research efforts at Mayo and asked to meet Amyloidosis researchers at Mayo. I met him 4 months after his transplant. Little did I know that meeting him would change the mission of my work … Tim Stepanek was the first patient with Amyloidosis that I met. His commitment to support research touched my heart. His knowledge about the current literature changed completely my view about the role of patient in disease research. Before knowing him, I thought that patients have enough work just by being patients and that there was nothing that a patient could teach a researcher, since well, researchers are the ones doing the studying and learning. I was wrong. Tim Stepanek humanized the research we conduct and made us change our minds in terms of where we wanted our research to go. Instead of choosing a topic that is intellectually stimulating and interesting, we shifted to thinking about the best approach to understand the disease and find a cure.

Tim's influence in my professional life didn't end by that meeting in October 2003. He went home and together with his wonderful wife, Cathy, decided that his donation was not enough. He wanted to do more. In three weeks, he organized a kayak marathon to raise funds for amyloidosis research.

That was the first time I was participating in an endurance race as a fundraising effort in my life. The marathon was called MAD DOG marathon because of the group of clinicians that manage amyloidosis at Mayo: Myeloma Amyloid Dysproteinimia Disease Oriented Group. Even though there were only 6 kayakers, including Tim, his son, his brother-in-law, his sister, my husband and I, the MAD DOG marathon raised around 60,000 dollars. That day, I started feeling part of the Stepanek family and I truly became committed to dedicate my efforts to improve the lives of people suffering from this horrible disease. I kept praying for his complete recovery because I wanted him to be the perfect poster child for Amyloidosis. I thought he deserved to be one of the lucky ones that don't die in 12-18 months, as the statistics define the fatal nature of this disease. Tim kept in touch with me as he continued to manage his Myeloma and Amyloidosis. He would sometimes ask me for a particular paper or a particular type of screening approach for drugs.

In 2004, I thought my prayers were answered because Tim kept getting stronger and stronger. They organized the 2nd MAD DOG marathon in September, on our son's second birthday. It was a glorious day. There were participants running, cycling, kayaking, canoeing and a pontoon boat shuttling people into the finish line. During that day, it was hard to keep up with Tim, he was kayaking so fast! I truly believe that he was winning the battle.

Unfortunately, the disease took a toll on his health, started affecting more organs, complicating his treatment. Tim spent quite a bit of time in the hospital during 2005. He always call 'his friends in the lab' when he was admitted, so we can visit him. I remember having lunch with him while he was getting his IV chemotherapy. One time I brought him in a wheelchair to the lab and we sat and chatted in our break room, like old friends.

On January 10, 2006, Tim called me. He had been admitted the night before and said that he had only a couple of hours to live according to the doctors. He wanted to say good bye to me. I ran to his hospital room and cried for the first time in front of him. His family was all there, accompanying him in his last journey on Earth. The doctors that first admitted him didn't know Tim very well and did not know that Tim was a fighter. Tim stayed alive, awake, aware and very much himself until the early morning of January 19, when he finally passed away.

I saw Tim for the last time two days before he died. I had talked to the program director at NIH overlooking my grant application. She had called me to say that there were very good chances to get my application funded because NIH was starting to realize that support for rare disease research was decreasing. I was able to share this great news with Tim and his family. My NIH grant was awarded and started funding us in May 2006.

I grieved him deeply. I lost more than a friend; I lost one of my most devoted supporters. But, I realized that his death did not change in any way the multiple lessons I learned from him. Tim left me with a mission: to do everything I can to learn more about this disease and find a cure.

The MAD DOG marathon efforts raised over 300,000 dollars for amyloidosis research. Their support was essential to endure the disappointing rejections from my grant applications from numerous agencies where some of the reasons for rejection were: "amyloidosis is a complex disease…" "Multiple mutations in the patients' samples have a confounding effect in the biophysical results…"

I miss Tim terribly and needed to do something besides research to support these devastating diseases. At the same time, I desperately needed to start exercising after spending 4 years of my academic career writing grant proposals. In January 2007, when I was preparing for the first anniversary of Tim's death, I received a Team in Training (TNT) mailing from the Leukemia and Lymphoma Society and thought that Tim would want me to participate in this type of fundraising. Training for a triathlon with TNT helped me to face challenges I have never been exposed to and to do things I never thought I would do in my life.

After training for 5 months with a wonderful group of individuals supporting blood cancer research, on July 13, 2007, I finished a triathlon in Minneapolis. When I was doing the bicycle portion of the triathlon, I felt Tim's strong presence with me in the beautiful streets of Minneapolis.

We have lost other heroes in the fight against amyloidosis. I had the privilege to know one of them. Maurice Price was another fighter that made a difference in my life, supported our research and work tirelessly with Carole, his wife to support patients and raise awareness.

Their efforts to fund amyloidosis research and raise awareness were not in vain. Their passion lives in the hearts of those that were influenced by them. We have a mission. Mine is in the laboratory, others work raising awareness, others support patients and families; others treat amyloidosis patients. We are a team, inspired by the hundreds affected by this disease.

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