In Memory of Our Friend Dr. Timothy Vartanian
By Regina Schroeder, Mind Brain Foundation
On Monday, October 20, I had my annual visit with Stacyann Smith, NP, rather than with Dr. Tim Vartanian. I pressed her gently for details, but she wouldn’t say when he might return. The next day, I heard he was unlikely to return to work, and by the weekend, I learned he had passed away. I’m still shocked that he’s gone, and I sometimes like to imagine he’s still just across the street, working away in the research lab.
I first walked into the Judith Jaffe MS Center in February 2011, after thirty years as an MS “DIY’er.” That day, my partner, Ian Green, and I were fortunate to meet Dr. Tim. That encounter truly changed the course of my life with MS.
A few months earlier, in October 2010, I saw another neurologist at a different hospital. He was kind, intelligent, and thoughtful. He told me I likely had MS and needed an MRI to confirm it. He recommended the medication Tysabri and suggested I read up on it. I did — and when I learned about the risk of PML, I was scared enough to put off confirming my MS diagnosis yet again.
I became aware that I might have MS in 1981, during my first and only hospitalization for the disease. MRIs were just emerging, and a spinal tap showed the classic oligoclonal bands in my spinal fluid. The doctors told me to go home, recover, and return only if my symptoms worsened before they could confirm MS. Before I was discharged, I took a hot bath—no one had warned me not to—and became temporarily paralyzed for ten minutes, a paralysis that faded as I cooled down. That fall, I went home and then started my first semester at the University of Colorado, Boulder.
In college, I read an old neurology textbook and confirmed the diagnosis myself. I learned about the “hot bath test,” used before MRIs to help identify MS. During my third year, my mom moved in for a week to help during a flare-up, but otherwise, I appeared and felt fine. I ran the Bolder Boulder 10K, climbed 13’ers, and embraced everything CU Boulder had to offer. One boyfriend even told me, “Regina, you’re as strong as a horse — you do NOT have MS.” Yet, I napped in the library every day. I once peed all over myself in the quad just standing there with my sister, and another time, I had to postpone a lifeguard test because I was too dizzy to get in the pool.
I followed a macrobiotic diet until I read about a cancer patient who had relied on the same approach and died. I loved exercise and convinced myself I was doing well, even as I quietly grieved the diagnosis—a grief I still carry, in small ways, every day.
By 1993, when Avonex became available, I was living in New York. I read about the flu-like side effects and decided that real progress still needed to be made—that a treatment closer to a cure would come along soon. I continued to delay seeing a neurologist and getting a formal diagnosis.
By February 2011, I had just finished working on the 2010 Census—my last paid job outside the home. To get through each day, I drank a Red Bull at lunch and was taking low-dose naltrexone (LDN), which was said to modulate the immune system and reduce inflammation, pain, and fatigue. LDN sounds obviously “scammy” to me now, but that’s where I was then. By the end of the Census, I was desperate: my leg spasticity had become crippling, keeping me awake at night with mind-blowing spasms. They were so intense that all I could do was laugh—sleeplessly.
Everything changed when I arrived at the Judith Jaffe Center in 2011, struggling with those incredible leg spasms. Dr. Vartanian looked at my MRI, scolded me for avoiding treatment all those years, and then said, “It’s all water under the bridge — we can’t worry about that now.” When I suggested waiting longer before starting medication, he steepled his fingers, looked at the ceiling, and mused, “Do I let you manage your own MS treatment?” Then he slammed his hands on the table: “No! I do NOT! Because I can see exactly where this will end up. You’re going on Tysabri. Therese will find you an infusion center that takes your insurance.” Firm, funny, and matter-of-fact, he left me laughing — the immovable object had met an irresistible force.
I connected with Tim, and he showed genuine interest in my symptoms, experiences, and response to treatment. That partnership energized and empowered me, and I responded to the facts — and to the science.
It’s often said that MS is a terrible way to meet terrific people — and it’s true. Tim quickly introduced me to the Judith Jaffe & Weill Cornell Imaging Walk MS team and made me team captain soon after. He also connected me with the founders of MS Hope for a Cure and the MS Hope Foundation. Over 14 years, our MS Walk team has raised more than $200,000, and through partnerships with these organizations, we’ve helped raise even more.
One evening, over dinner to thank us for our fundraising for the MS Walk, Tim mentioned he needed $3 million to complete his MS research. That became our mandate — and we filed to form what is now the Mind Brain Foundation, a 501(c)(3) dedicated to funding research on brain diseases and therapies. Since 2011, we have raised more than $400,000 across all fundraising platforms.
Our first fundraiser supported Dr. Gauthier’s imaging research. Before her work, no one thought to measure improvement, yet new drugs were showing changes that needed to be quantified. Some funds also went to Dr. Jeni Linden’s novel blood assays, which made information once available only through autopsy accessible via a simple blood sample, giving neurologists real-time insight into their patients’ MS.
The evening after our first benefit, a friend and former stand-up comedian suggested we hold comedy shows to benefit MS research — because laughter truly helps heal. Today, MS Stand Up focuses on supporting specific researchers at Weill Cornell. In the run-up to each show, we produce a short video highlighting the scientists’ work to raise awareness about how research actually happens. We continue to support Dr. Jeni Linden and this year, Dr. Yinghua Ma, raising both funds and awareness for their vital investigations — and for the persistence it takes to keep their work alive in peer-reviewed journals.
Carrying the Work Forward
Tim gave me more than medical care — he gave me direction, purpose, and a community. The Mind Brain Foundation is that purpose made real: a way to carry forward the work, laughter, and courage he inspired in so many of us.
We continue to support Dr. Yinghua Ma’s research at Weill Cornell, funding his investigations through 2025. You can help by contributing to our campaign at GoFundMe: https://gofund.me/0bf82bfdc
We’ll keep showing up for the research, for the patients, and for the future Tim imagined — one where life with MS keeps getting better.*
Tim Vartanian, Tom Horton, Chief Administration Officer, Neurology, and Regina Schroeder
