The End of the Beginning…

Well, this is it. Our last treatment. After 12 years of weekly infusions, today is the last one. It comes with mixed emotions, Hope, Fear, Worry, Anxiety, and Anticipation to name a few. And Gratitude. Heartfelt gratitude. When Isaac was diagnosed, we didn’t know what the future would hold. We didn’t know if he’d have a future, let alone how

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Gala Announcement and Some Exciting News to Share

Hi Everyone, Just a quick note to let our families, friends, and supporters know that our Annual Gala for a Cure and Rare Disease Symposium, traditionally set to take place in November each year, will have to be postponed. Our new date is April 4-5 for the Patient Symposium and April 6th for our Gala Celebration. I hope you can

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This Beautiful Life…

Of the millions of moments you live in this beautiful life, you never know what moments are going to remain with you. Often the things that stick are small things, moments you’d never peg as being important or memorable at the moment you’re immersed in them. And then one afternoon twenty years on, or thirty or forty or even fifty years drift past,

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