11th Annual Bowling Event to Benefit the Chordoma Foundation

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Ward Parkway Lanes

1523 W 89th Street

Kansas City, MO 64114

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About a month away and only 60 spots left, please register today!

Chordoma is a slow growing malignant bone cancer that develops in the skull-base (head) and spine. It is treated with surgery and radiation - there are no drugs approved to treat chordoma - and it is prone to recurrence. Chordoma is truly a one in a million diagnosis, with approximately 300 cases diagnosed annually in the United States. The Chordoma Foundation was founded in 2007 to improve the lives of those living with chordoma and to ultimately find a cure for the disease. For more information, please visit www.chordomafoundation.org.

In 2003, Jeff Schilling was diagnosed with a skull-based chordoma. He had surgery to remove the tumor followed by radiation. Unfortunately, Jeff's cancer returned in 2007, 2010, 2013, 2014 and Febuary 2016.

At Jeff's last check up in late May we found out that his cancer has returned again for the 6th time. Because he was not symptomatic and due to the complications associated with surgery (especially for someone like me who has already been operated on and received radiation in the area of the tumor repeatedly), my neurosurgeon suggested to look into drug trials.

While there still are no approved drugs for Chordoma, due to the efforts of the Chordoma Foundation there are now multiple trials. Through the Foundation we identified a trial at Johns Hopkins that was accepting new patients. Unfortunately after evaluations in Baltimore we found out that he didn't qualify due to the amount of radiation he has received in the past.

Oncologists in Baltimore and at KU have suggested an off label drug called KeyTruda, which is an immunotherapy drug like trial drug I had hoped to try. Jeff had his first dose Friday morning and will have treatments every 3 weeks for 3-4 months in hopes it stabilizes the tumors. In the meantime, we will also monitor trial developments and the tumor growth.

This is first time that we have been able to benefit so directly from the Foundation. This year so far the Foundation received $165,000 in community fundraiser donations. The two events we host in KC have brought in almost $70,000 per year in past making up a large piece of the Foundation's community fundraising. So, thank you to all who support Swing Fore the Cure and/or the Bowling Event.

Maggie Bates was diagnosed with a skull-based Chordoma in 2012. She’s had several surgeries at KU Hospital and many rounds of radiation at Massachusetts General Hospital in Boston to address the original tumor and two metastases, the most recent in 2016.

Thank you,

Erin & Jeff Schilling, Kari & TJ Smith, Diana & Jason Beckman, Laura & Jay Muelhbach, Laura & Marty Mulcahy, Maggie & Jon Bates, Staci & Justin Birk, Jean & Brendan McPherson, Angie & Luke Atkinson, Victoria & Mike Anderson

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Ward Parkway Lanes

1523 W 89th Street

Kansas City, MO 64114

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