Video Library

Window Into The Unknown: The Power of Rare

Dr. Maria Spiropulu:

Rare is the window to the unknown. To discover the rare is to push knowledge, and to study the rare is to create foundational frameworks. We need to have special approaches to understand, discover, and learn about all rare phenomena. Everything in our knowledge used to be rare before we knew it.

Dr. J. Craig Venter:

Imagination is a very key part of science. What I find is by looking across the entire spectrum of symptoms with a rare disease, you can find the genetic basis of it, and we’re finding them all to be interrelated.

Dr. Michael Yeaman:

Dysfunction in immune identity is the fundamental cause of autoimmune disease, NMO, of course, but also lupus, Sjogren’s syndrome, Myasthenia gravis. The immune system can be used to overcome those complexities to solve the disease with the same immune system that caused it.

Dr. Tanuja Chitnis:

The risk for NMO and other autoimmune diseases is a combination of complex genetic factors. This is a predominantly female disease, which is very important. A lot of autoimmune diseases occur mainly in women. We need to take that information into account, and really think about how to better diagnose the disease, better identifying, curing of NMO, or prevention of NMO.

Dr. Eli Katz:

Studying a small disease like NMO actually can contribute a lot to the understanding of immunological mechanism, [inaudible 00:01:23] autoimmune diseases. It can affect treatment of cancer, et cetera. So everything we learn about it actually can help in many ways.

Dr. Nancy Sicotte:

One of the things about NMO, because it’s so rare, you can learn so much from one person. That one patient can actually lead us into new directions, but I think it takes being aware, being curious, and being persistent.

Megan Woolf:

Despite having this debilitating disease, you’re still able to do things even though they might be more challenging. You have the power within yourself to strive towards what you want.

Tinetra Adams:

I want to be a part of the plan. I want to be a part of the power, because I know that there has to be something up there. I’m not going to let anything or anyone stop me.


I was in a wheelchair. I was bed bound even, and I went from a wheelchair to walking again, to skiing again, all because the foundation gave me that positivity. They were able to help me refine, define, and narrow down a path that is going to work for me to make sure that I can live the best possible life. It’s amazing that we all have a rare disease, but we have a commonality to want to fight it, to cure it, and to make sure that we can stop it in its tracks before it gets to the next person.

Dr. Eli Katz:

The only way to move things forward in medicine these days, you need collaboration. And if you don’t have it, you probably not going to make progress.

Dr. Nancy Sicotte:

You need the clinicians to identify the patients to get them enrolled in the studies. Then you need mathematicians. You need the geneticists.

Dr. J. Craig Venter:

Building multidisciplinary teams creates a catalytic event for people trying to come up with solutions that might not have been possible otherwise.

Dr. Dom Spinella:

A bunch of people with rather disparate research interests, but all interested in patient care in neurology have come together and aligned around this rare disease. You don’t really see that very often. Patient care is really the prime directive here, and I think this can be a model for other kinds of diseases.

Ali Guthy:

That’s the power of rare right there is any each other. And what we find when we communicate and support one another, just the endless possibilities of things that we could accomplish.

Jodi A:

Being rare, it makes you stand out. We can make a difference. All of us together, we can make a difference.


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