Defining “Cured” from the Sarcoma Trenches
By guest blogger and sarcoma survivor, Julia McGrath It didn't take me long after being diagnosed with sarcoma to come to the conclusion that cancer terminology can be really confusing. But here's how I choose to see it... Most folks gather with their friends at the...
No Rare Disease Pity Party Here!
My family and friends will tell you that I’m a data dork, learn-a-holic and question queen. I guess that is a compliment? 😉 Since taking the helm at the foundation, I’ve been doing a lot of thinking about whether raising funds for a rare disease is more difficult...
Ground zero, but my way…
It was June 2009, and a big day for me. I had just returned from the car dealer, having closed one of life’s chapters by trading in my ancient mommy van for a gently-used, lightning-fast sedan. I stared in glee at my sparkly red machine, reveling in my happiness over...
Our Supporters Don’t Need the Nickel!
During a recent trip to my mailbox, I retrieved a donation solicitation that yielded a familiar sight; one that I must admit, kinda irritates me. In the window of the envelope, near the familiar stream of return address labels, a shiny new nickel is on display for the...
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