Wednesday, March 9, 2011


Very excited to announce that the American 5K Run/Walk will again be held on Memorial Day Weekend, Saturday, May 28. Last year‘s inaugural race was a great success as a benefit for Lt. Dan Berschinski. I got to meet Dan in October 2009 when he was recovering at Walter Reed.  I was in DC speaking before Congress about FOP. This year, the proceeds in honor of me, go to the IFOPA.

The International FOP Association (IFOPA) is a 501(c)(3) non-profit organization supporting medical research, education and communication for those afflicted by the rare genetic condition Fibrodysplasia Ossificans Progressiva (FOP). Our mission is to eliminate FOP as a health concern through education, advocacy, research and support.  April 26, 2006 the FOP gene was discovered.  We are now just waiting for the cure!  We need your help! 

Thanks to the Peachtree City Running Club, Carolyn Gulick, the Berschinski's, and everyone else involved to make this event great and successful! 

To register for the All American 5K as a Runner, Walker, or Phantom Runner, click: HERE !

See you in May!

Tuesday, March 1, 2011

Unmasking The Mystery Of FOP II: A Benefit for FOP Research

I just got back from a great weekend in Houston.  My friend Nikki (I met through the amputee community, she is a double below the knee amputee) put me up at her house.  We met through the wonderful world of Facebook.  We always met up each year at the annual amputee conference.  We met another amputee friend, Derrick for dinner Friday evening - and Sunday for dinner we met up with Thomas who is a recent amputee.

On Saturday Nikki, Brock (her husband), and I attended the Unmasking The Mystery Of FOP II: A Benefit for FOP Research in honor of IFOPA member Cody Dennings. Dinner, Dancing and Silent Auction with a Mardii Gras Flair.  

FOPers: Daunte Hernandez, Steve Eichner, me, Cody Dennings, and Nick Mahler
 It was nice to reunite with some of my FOP family.  Cody and his family live in that area; Nick and his wife came in from Dallas; Steve and his wife came in from Austin; Daunte came in from Las Vegas.  There are ONLY 5 known FOP Patients in the whole state of Texas.   

me and the Dennings - Cam, Jen, me, Dave, and Cody
The Dennings did such a fantastic job on this event! The appetizers, dinner,  desert, entertainment, volunteers, silent auction items. It was a fun filled night.  I was so pleased I could come out and be apart of this great cause.  I met so many great wonderful people at this fundraiser.