I looked forward to this weekend so much. A huge part of the ride. I had arrived in Philly for The 2012 Annual Desmoid Tumor Research Foundation(DTRF) Patient Symposium and Running For Answers(RFA) events. A weekend of getting the latest information about Desmoid Tumors and Familial Adenomatous Polyposis [FAP], connecting with fellow patients and being able to take in some of the historical sights in Philadelphia.

My mom and I went to the 2011 events. It was an incredible time. It was the first time we had connected with other patients and their families in our entire history of these two rare diseases. My mom was able to have conversations with other mothers of children who have Desmoid Tumors and FAP. She had never had an opportunity to do such a thing in all the years since my dad was first diagnosed with FAP back in 1974. For her to share stories and information with other mothers was a true gift. For me it got me out of my Desmoid Tumor/FAP bubble. I had never met any people in person who shared these two rare diseases. It very much fueled my ambition to make this ride happen and succeed at getting awareness for Desmoid Tumors and FAP.

2012 was a huge year for these events. My mom and my sister Laurie, who also has a Desmoid Tumor and FAP, met me in Philadelphia. The DTRF managed to establish an amazing line-up of doctors, researchers and speakers at this year’s Patient Symposium. And, the RFA Run/Walk increased the number of participants significantly. Oh yeah, and there was a certain Rosie in the crowd. Yup, you guessed it, Rosie O’Donnell. Rosie’s new wife, Michelle, was diagnosed in 2012 with a Desmoid Tumor and had surgery to remove it. Having a celebrity committed to the Desmoid Tumor cause definitely can’t hurt getting Desmoid Awareness out to the masses.

I would like to thank Desmoid Tumor Research Foundation co-founders, Jeanne and Marlene, for seeing the need for a organization dedicated to raising funds and awareness for this mega-rare disease. They have committed themselves to establishing, maintaining and making the DTRF grow and grow. My fellow Desmoidians have very much benefited from the efforts of the DTRF. And will continue to.

The 2013 events cannot come soon enough.


Rosie O'Donnell at RFA

Oh look, it’s Rosie O’Donnell. Right before the RFA Run/Walk started.

Michelle Rounds at 2012 RFA

Rosie’s wife and fellow Desmoidian, Michelle Rounds, before the RFA Walk/Run. (Hint. She’s the one with long blonde hair.)

Me with a fellow Desmoid Tumor/FAP patient

I was fortunate enough to meet and walk with this wonderful panda/Desmoid Tumor and FAP patient. Jean, I’m so glad we met and were able to walk the walk and talk the Desmoid/FAP talk. We share more than a few of the issues that people with Desmoid Tumors and FAP have to live with. Like for instance, the left ureter stricture/stent and kidney damage thing.

Rosie, Michelle and me.

After the Patient Symposium I ran into Rosie and Michelle in the hotel lobby. They were kind enough to pose it up with me. Still have my card Rosie?

Doing the Rocky

After the RFA Run/Walk and Patient brunch, my mom, Laurie and I did a little sight-seeing before we parted ways. And yes, I’m doing the Rocky in this photo. As you can see in photo, serious stuff. Ha.

Mom and me in Philly

My mom and I striking a pose right before she and my sister headed back to Wisconsin.