Benefit Concert Blast Off for Sarcoma Awareness Week

The  community we live in put together an amazing line-up of musicians for a benefit for Killian. Bruce Katz and Randy Ciarlante, Peter Schickele, Woodstock String Quartet, Fran and Brian Hollander, Vinnie Martucci, Gary Kvistad w/ Giri-Mekar and Fido. I know the event wouldn't have had wings without Wini Paetow, Krista Cayea, Jim Sofranko, David Andrews and the good folk at the Shokan Methodist Church. I'm sure there's someone I'm missing, but huge thanks to the Boiceville Inn, Catskill Mountain Coffee, Hanover Farms, Boiceville Supermarket, Hong Kong Chinese Restaurant, Kasey's Cafe, Bread Alone, Winchell's Pizza, Olive's Cafe, Village Pizza, Reservoir Deli, JaBellis Bakery, Anne Marie Johanson, Chet Karatowski, Eriv Karatowski, Millie Delgado, Dusty Stack, Sarah Cole, Linda Greenleese, Francine Scherer, Maryanne Olsen, Sarah Fairbaim, Charlie Blustein, Lolly Adler, Carol Muranti, Candace Sosler, Amy Russell, Bruce and Linda Golden, Natalie Van Mulken, Suzanne and Ed Kossoy, Vikki Reid, Charlie Woodruff, Connie Kieltyka, Callie and Livvy Paetow, Stephen Bielecki, Carol Maltby, Loretta Dooling, Mega Van Gorden, Chet Cochrane, and Nate Cayea. The event was successful in so many joyful ways. We live in a very special place, with very special friends and neighbors. Lots of us found each other at the General Store and I'm grateful the Mansfields had that for a time. When folks around here come together to help their neighbors, the positive energy is palpable. I sort of wish that this particular 'coming together' was to help some other son. I'm comforted that we know so many people of remarkable character. For instance, I know that we were not the only family battling cancer at the Shokan Methodist Church last night. It blows me away, the strength  in people. I feel it strengthen me and I know Phil feels the same - we've talked about it.

July 12-17 is Sarcoma Awareness Week. About 1% of adult cancers are sarcomas (and about 20% of all children's cancers). Many sarcomas resist current treatments and Killian's Synovial Sarcoma definitely falls into this category. Because sarcomas are rare cancers, developing new drugs is not lucrative for pharmaceutical companies. The approval process for these orphan drugs (those that treat rare diseases) is slow and frustrating for those of us whose hopes float on news of treatment options. Killian, fortunately, got into a study being conducted at the NIH of Yondelis (aka Trabectedin or ET-743). We were ready to jump on a plane and move to Spain if we had to in order to get this drug - that's how promising we think it is. Yondelis is a standard of care in Europe and has been in trials here for years. This year's theme for Sarcoma Awareness Week  is "Sarcoma Knows No Borders." One reason for the theme is that the treatment options are being developed worldwide and that this international effort is essential. Another is that sarcoma effects the connective tissues in the body (and doesn't feel confined by borders or margins, often recurring in spots unrelated to the first area of treatment). I'll be at the Boiceville Market on Friday selling "Sarcoma Knows No Borders" bracelets. 100% of sales go to sarcoma research via the Liddy Shriver Sarcoma Institute.