Buffalo has become a leading international center when it comes to the research and treatment of multiple sclerosis. The National MS Society also estimates the region has a high incidence of those with the potentially debilitating neurological disease.
Both realities explain why Penny Pennington and the University at Buffalo Jacobs Center for MS Treatment and Research wanted to bring a Multiple Sclerosis wellness conference to the Buffalo Niagara Medical Campus this month.
"For the first time, the MS Society is using the word 'cure' as a realistic goal because there have been so many advances in understanding the immunology of this disease," said Pennington, a retired Merck pharmaceutical executive diagnosed with MS in 1977, during her senior year in college.
The 64-year-old Elma resident sits on the advisory committee of the Buffalo Neuroimaging Analysis Center (BNAC), which uses imaging to help better understand MS causes and treatments. Five years ago, she helped found Advancing Research in Multiple Sclerosis (ARMS), a group which seeks to bring a patient perspective into MS research.
Pennington and other organizers of the MS Research Wellness Conference will bring together top doctors and researchers in the region, as well as Dr. Terry Wahls, an internist from Iowa who has MS and advocates a special diet and exercise to keep it under control.
The conference will run from 8:30 a.m. to 3 p.m. Oct. 27 in the Jacobs School of Medicine and Biomedical Sciences, 955 Main St.; it’s free, though registration is required by clicking here.
The immune system attacks the central nervous system – the brain, spinal cord and optic nerves – to forge multiple sclerosis. It can be mild, moderate or severe, often depending on where in the body the attack is centered. Symptoms can include fatigue, numbness or tingling, walking or vision problems, pain and brain fog.
Q: Why a wellness conference?
There are major findings that would bring important insights for people in terms of their lifestyle decisions related to diet and exercise. At the same time, in this age of consumerism, there's a lot of information that's out there on the internet and through some self-proclaimed wellness experts that can lack scientific validation. No matter what neurologist you see, we want to have a community here where we all have a way to connect, to share what we've learned ... make sure it's scientifically validated, and understand the limitations.
Q: Who should attend?
Anybody living with MS interested in getting some of these new insights. The incidence here in Western New York is twice the national average. There are various theories about why. A cluster of genes probably represent more of a propensity. There are various theories about environmental events. Terry Wahls has her views on what's going on inside our bodies, our immune systems, making us vulnerable. ... It's probably multifactorial, so that's why it's here.
Q: What do you wish most people with MS understood better about treatment, research and management of the disease?
I want people to be hopeful and to understand that their lifestyle decisions have a lot to do with what their clinical course will be. We really want to give them the sense of empowerment.
Q: What three key things have helped you most in managing your MS?
Education, keeping myself aware of what's new and out there. Determination. I don't want to be in this victim mindset. And empathy. I know that living with this disease has allowed me to better appreciate what's important in my life. It definitely takes away materialism. All of this leads back to a circle of self-fulfillment. All the things that I do, I do strictly as a volunteer. It's healthy for me.
Q: What is your take on stopping drug treatments?
I don't believe there is currently data is out there to support that ... but I'm open to looking. I take a potent, disease-modifying drug three days a week, rather than seven, based on the recommendations of my physician. What I prefer to see is not the notion of diet or wellness versus drugs but wellness as complementary to drugs.
Q: What Buffalo MS research most excites you?
There are some novel drugs that are coming out and being investigated here. I'm carefully watching those. The potential for myelin repair is being studied clinically at the Jacobs MS Center and in the UB Department of Pharmacology.
Q: Beyond Buffalo?
There's very promising research being conducted in many centers around the country to advance our understanding the causes and potential repair of the damage caused by MS. Harvard has a great microbiome project going on. It's very fascinating what they're learning with that, not just with MS treatment but all autoimmune diseases.