Advancing Research in Multiple Sclerosis
Linda J. Safran, ARMS Founder
Because the diagnosis of MS often takes many years, the "diagnosis story" illustrates how confounding the disease is to both patients and clinicians. Here is my story and the story of how I am trying to make "lemonade" out of the lemons I now have.
I was diagnosed with MS in April, 2009, just 5 years ago. I was 62 at the time and had been living in Baltimore for over thirty years, where I had a long and fulfilling career in fundraising and where I raised my two daughters.
I had had an optical event in 1984 before MRIs were available. After many tests at Johns Hopkins ruled out lots of other neurological disorders, I was told it could be MS or maybe nothing and advised to live my life, but to be mindful that MS was a possibility. For years I had no symptoms. I let all my clinicians in every specialty know of the optical event and that it might have been caused by MS. By November, 2008, 25 years after the optical event, I started to have very mild tingling in my right hand and occasional nighttime leg spasms and was referred to a neurologist. Six months later, I had an MS diagnosis.
Today, walking unassisted is difficult. I use a rollator (walker with wheels) to get around and, sometimes, a scooter for malls and museums. I am naturally right-handed but it’s now very difficult to do many things with my right hand. My MS progressing. There is essentially no research that can guide me or my neurologist in what I can do to forestall more progression. Thankfully, because my lesions are in my spine and not in my brain, my symptoms affect only movement, for now.
The months immediately following my diagnosis were filled with late night internet searches, educating myself about MS. I eagerly followed news within the very active MS internet community about a comprehensive MS study announced in August, 2009 by Dr. Robert Zivadinov, Director of the Buffalo Neuroimaging Analysis Center.
He designed a study to test the new chronic cerebrospinal venous insufficiency (CCSVI) theory that had just been proposed by Italian vascular surgeon, Paolo Zamboni: that multiple sclerosis was actually caused by vascular constrictions in the neck area and that a procedure he invented to open up the veins could cure MS. If true, this would be ground-breaking for the 2.3 million people with MS.
At that time, hundreds of people with MS were reporting on blogs about CCSVI procedures they were paying for privately at the cost of upwards of $40,000 at clinics all over the world. Irregardless that the controversial CCSVI procedure was not yet tested for safety or efficacy, people with rapidly progressing disease were willing to travel around the world to have an expensive, unproven procedure. It was in response to this phenomenon that Dr. Zivadinov created a well-designed, IRB-approved large study of over 1,000 subjects to test the theory of prevalence of constricted veins in people with MS.
I traveled to Buffalo in November, 2009 to participate in the 3-day CCSVI prevalence study where I met Dr. Zivadinov and his team. By December, I had started to raise funds for Zivadinov's study as a consultant. In April, just a year after my diagnosis, I moved back to my hometown of Buffalo to work full time fundraising for the CCSVI prevalence research and for a subsequent 30-person study to test the safety and efficacy of the venous procedure. During my four years supporting Dr. Zivadinov’s investigator-initiated MS research, we raised $900,000 from over 900 people worldwide. Although the CCSVI study did not verify the original Zamboni vascular constriction theory, it received international recognition in advancing the understanding of MS in significant ways. The 1,000+ person MS dataset is now an invaluable resource for future work in MS and other neurological diseases.
Formation of ARMS
The formation of ARMS was another very significant hallmark of my years in Buffalo. Thanks to a press conference called by NY State Senator Mark Grisanti to rally support for state funding for MS research, the women who later formed ARMS met and "clicked." Although the MS research bill failed to pass, the press event sparked the creation of ARMS.
After a few meetings, we identified a small project that would be helpful to the Department of Neurology MS researchers and which we could fund from amongst the group members.
We were soon thinking much bigger. We now had a track record in funding MS research. Several members of the group already knew the Buffalo MS research team very well. Because of this, we were able to convene this esteemed group (Drs. Bianca Weinstock-Guttman, Ralph Benedict, Murali Ramanathan, and Robert Zivadinov) to ask them to devise a study for which we would find funding. We asked them to look at a cohort for which there is essentially no research: older patients whose disease is in the progressive stage. Could they find any factors that could improve the quality of life by arresting or slowing progression? We felt we could raise $75,000 for such a study. The team welcomed this opportunity with enthusiasm and devised the MS Progression and Aging Study. ARMS has endorsed the study and we are in the process of raising the funds that will go directly to the Department of Neurology.
Traditionally, MS researchers receive funding for studies from the government for what is known as "investigator-initiated research." Or, drug companies contract for research. This may possibly be the first ever patient-initiated study.
I am now semi-retired, living in Portland, Oregon near my older daughter and her family. I am delighted to serve on the ARMS board. As you read the bios of the other founding members, you will learn of the many wonderful gifts each brings to our mission: advancing the understanding of MS and finding a cure.
I find inspiration in the words of anthropologist, Margaret Mead and hope you will, too:
Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it is the only thing that ever has.
We board members have linked ARMS to become MS advocates. We hope you will become a member and help show the world that ARMS has...LEGS!