Hi Everyone –

Welcome to our new blog. We want to keep you updated on some of the some of the great things so many people are doing on behalf of those with KCNQ2.

We would like begin by extending a very special thank you to Tony Gleason. Some of you may have met Tony at our last summit. Tony’s granddaughter, Lucy Roberts, has KCNQ2. Tony understands how this devastating form of epilepsy affects everyone in the family. He knows the daily challenges faced by his daughter Megan and her husband Patrick as well as by beautiful Lucy.

We are thrilled and deeply grateful to announce that Tony Gleason has donated $250,000 to our foundation.
This generous gift will do so much. It will help fund more summits, including the one October 7-9, which Megan and Patrick Roberts are helping to plan. Tony’s gift also helps support the great work Professor Ed Cooper is doing at his lab at Baylor in Texas. And it will provide money for other scientific research for a cure for KCNQ2. You’ll find complete details in the press release in the media section of our website.

Tony, you are our children’s champion. Thank you.

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[two_third_last padding=”25px 0 0 0″]Another friend of the KCNQ2 Community is my high school pal, Alice Bowman. Alice and I went to Tucker High School in Richmond, Virginia, and then attended the University of Virginia. Alice is now a NASA superstar – Mission Operations Manager for New Horizons, a small spacecraft with a big assignment. The eyes of the world were on New Horizons last July when it took the first photos of faraway Pluto.[/two_third_last]

What does this have to do with KCNQ2, you ask? Good question.

Alice agreed to be the keynote speaker at our first KCNQ2 Cure Alliance fundraiser here in Melbourne, Australia. We were thrilled that three Melbourne KCNQ2 families could join us. Alice was joined on stage by one of our scientific advisors, Professor Ingrid Scheffer. The sell-out crowd sat spellbound as two world-leading scientists spoke of “New Horizons” on the macro and micro scale; in space and genetics.

Our event was hosted and sponsored by PwC Australia, which provided a fabulous meal and wine for 200 people in its glittering office tower on the banks of Melbourne’s Yarra River. And they didn’t charge us a cent. Thanks to that generosity, we raised nearly $50,000 – all of which will go to scientific research.

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A couple of the great Australian families who attended our fundraiser in Melbourne

That kind of generosity makes me think about something Alice said about the Pluto mission. You see, getting someplace that is 2.6 billion miles away — 4.2 billion kilometres — is pretty daunting. Even when a spacecraft is travelling at 36,000 miles (57,600 km) an hour. The one-way trip was scheduled to take 12 years. But Alice and her team figure out a way to use the planet Jupiter as a sort of interstellar slingshot. They could send the New Horizons spacecraft hurtling forward using the planet’s gravitational orbit. It wasn’t easy, but they did it. Jupiter’s gravitational gift was massive. “By sling-shotting off Jupiter, we shortened our journey by three full years,” Alice explained.

It seems to me that Tony, Alice and corporate sponsor PwC are a lot like Jupiter. Each has given us the gift of their gravitational orbit – propelling us forward with their funding, their resources, their credentials, their reputation and their good will. They have sent us hurtling forward far faster than we could ever have done on our own. As I learned from Alice, a slingshot can be a powerful tool when it comes to traveling through deep space. And, as it turns out, when it comes to finding a cure for KCNQ2.

Sara James