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A Decade of Breakthroughs

Victoria Jackson:

To watch your child suffer was brutal. At the time Ali was given four years. I thought, I’m going to start a foundation, and I’m going to find a cure for this disease. That was day one for me.

Narrator:

A decade ago little is known about neuromyelitis optica, when Victoria and Bill learned their daughter, Ali had NMO, they felt alone and in the dark. Even so they were determined to help her, and rare patients like her. They formed the Guthy Jackson charitable foundation uniting a community of problem solvers from around the world who would never have come together otherwise.

Alan Verkman:

The foundation has done a fabulous job in facilitating collaboration.

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.

Larry Steinman:

Immense amount of data sharing that is unprecedented.

Claudia Lucchinetti:

The foundation integrates the kind of critical thinking, multidisciplinary approach that we need.

Dom Spinella:

A bunch of people 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.

Victoria Jackson:

I feel like I have the benefit of all these doctors, here and across the world that are working together in collaboration.

Narrator:

These doctors are wonderful. Being able to call, especially because it’s been some days I’ve been like, this is scary.

Jesus Loreto:

The energy, the hope, the security that we felt.

Rachel Tracy-Sheaffer:

A sense of belonging.

Sean Pittock:

Patients have told us what the disease is. They have defined the disease.

Narrator:

These symptoms that nobody can see are actually real and you’re feeling them and it’s validating.

Christine Ha:

The foundation really brought together all of the information and they’re centralizing everything, which is a really good resource in this field because it is so rare.

Maria Spiropulu:

Rare is the window to the unknown. You need to have special approaches to understand, discover, and learn about [inaudible 00:01:58]. Everything in our knowledge used to be rare before we knew it.

Narrator:

What began with one woman’s love for her daughter has become a global mission for cures. The power of rare, can help solve the unsolvable, cure the incurable. From rare patients to rare partnerships, the foundation has sparked a bold new movement for health.

Ali Guthy:

It’s so exciting just to see what we’ve been able to accomplish in 10 years. I mean, you look at other major diseases that have been around for a long time, and just the progress that we’ve been able to make in such a short time span is really unprecedented, and so we’re just excited to share that with everyone.

 

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