I first walked into the Judith Jaffe MS Center in February 2011, after thirty years as an MS “DIY’er.” My partner, Ian Green, and I were fortunate to find Dr. Tim Vartanian — and it made all the difference in my life with MS. On Monday, October 20, I had my annual visit with StacyAnn, instead of Dr. Vartanian. Though I pressed her for specifics, she refused to be pinned down on when he would be back. On Tuesday I heard from someone that he was unlikely to return to work, and learned that weekend that he had passed. I’m still shocked that he’s gone, and I like to pretend he’s still around — maybe in the research lab across the street.
Facing MS realistically began when I came to see Dr. Vartanian in February 2011. I had visited another neurologist at a different hospital in October 2010. That doctor — kind, intelligent, and thoughtful — told me I likely had MS and needed an MRI to confirm it. He recommended Tysabri and suggested I read about it. I did — and learned about its risk for PML. That frightened me enough to let the whole idea of confirming an MS diagnosis go, yet again.
My journey? I prefer to think of it as a long meditation on MS that began in 1981, with my first and only hospitalization with MS. In 1981, MRIs were just coming into use. A spinal tap showed the classic oligoclonal bands in my spinal fluid, but the doctors told me I would have to go home, get better, and then come back when it got worse before they could confirm MS. Before I was discharged from the hospital, I took a hot bath — no one had warned me not to. I became temporarily paralyzed for ten minutes, a paralysis that faded as I cooled down. I went home, and from there straight to the University of Colorado, Boulder that fall.
In college, I read an old neurology textbook and diagnosed myself. I learned about the “hot bath test,” used before MRIs existed to help confirm MS. My mom had to move in with me for a week during my third year to help during an exacerbation, but otherwise, I looked and felt fine. I ran the Bolder Boulder 10K, climbed 13’ers, and enjoyed everything CU Boulder had to offer. One boyfriend told me, “Regina, you’re as strong as a horse — you do NOT have MS.” But I napped in the library every day. Once, I peed all over myself in the quad just standing there with my sister. Another time, I had to delay a lifeguard test because I was way too dizzy to get in the pool.
I followed a macrobiotic diet until I read about a cancer patient who eschewed treatment for the same diet and died. I loved exercise and convinced myself I was doing well — even as I quietly grieved the diagnosis, a diagnosis I still grieve a little every day.
By 1993, when Avonex came out, I was living in New York. I read about the flu-like side effects and decided that real work still needed to be done — that something closer to a cure would come along soon. I delayed finding a neurologist and getting a formal diagnosis further.
By February 2011, I had just finished working on the 2010 Census — my last paid job outside the house. To get through each day, I’d drink a Red Bull with lunch. I was also taking LDN, low-dose naltrexone, which was said to modulate the immune system and reduce inflammation, pain, and fatigue. By the end of the Census, I was desperate: my leg spasticity had become crippling, keeping me up at night with mind-blowing spasms. It was so unbelievably bad that I could only laugh — sleeplessly.
Everything changed when I got to the Judith Jaffe Center with those incredible leg spasms in 2011. Dr. Vartanian looked at my MRI, read me the riot act about avoiding treatment all those years, then said, “It’s all water under the bridge — we can’t worry about that now.” When I suggested waiting longer before trying medication, he steepled his fingers, looked at the ceiling, and mused aloud, “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.” He was firm, funny, and matter-of-fact. I laughed — the immovable object had met an irresistible force.
Tim almost immediately made me team captain for what became the Judith Jaffe & Weill Cornell Imaging Walk MS team. Our team has raised over $200,000 in 14 years. He introduced me to the founders of MS Hope for a Cure and the MS Hope Foundation. It’s said that MS is a terrible way to meet terrific people — and it’s true.
I connected with Tim and his genuine interest in how I felt, my symptoms, and my response to treatment. It created a partnership in my care that energized and empowered me. I responded to the facts — and the science.
One evening, over a dinner to thank us for our fundraising for the MS Walk, Tim discussed his research on MS. And for me out of the conversation came the mandate — and I filed for what is now the Mind Brain Foundation, dedicated to raising funds for research on brain diseases and therapies. We have raised more than $400,000 across all fundraising platforms since 2011.
Our first fundraiser supported Dr. Gauthier’s imaging research. Some funds also went to Dr. Jeni Linden’s lab.
The evening after our first benefit, one friend — a 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 about the scientists’ work to raise awareness about how research actually happens. We continue to support Dr. Jeni Linden and 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 that he inspired in so many of us.